Thyroid UK
90,363 members104,722 posts

No thyroid, refusing meds

My daughter has hashimotos and had lots of cysts and large goitre, her thyroid was removed a couple of years ago. Long story short, she’s stopped taking levo as she’s so sick of being unwell (has sjogrens too) that she wants to die. She’s been in hospital for three weeks but still refusing to take meds. Her TSH and T4 are not measurable, her body temperature is 35.7 and she has lost weight. I am obviously desperately worried, can anyone offer ad advice please??

EDIT (7 March) - My beautiful daughter is eating more so has gained some weight AND has taken meds for three days! She's having further tests for another autoimmune disease so we're not out of the woods but I certainly feel more positive. She'll be home next week or week after then I'll be asking you lovely people about t3 dosage. Your comments, advice and support have been so so so helpful - I really do appreciate it xx

184 Replies
oldestnewest

Hello

Its difficult to know what to say really. The only thing to do is try to convince your daughter to allow the doctors to treat her illness. Maybe, if she went back on her levo tablets the doctors may then be able to find out how to get her better again. She has to just trust her doctors to help her get well and, for the time being, take their advice on how to get well again and then take it from there really.

2 likes
Reply

Hi, thanks linthyro, I’ve tried the gently gently approach, the direct approach but she’s so far gone there’s no reasoning. I’m so scared she’ll be discharged if she don’t cooperate!!

2 likes
Reply

Why don't you tell her that you will get her some T3 and then by all means, do it! People will PM you sources.

14 likes
Reply

Pray for her...God is able and He will work it out.

1 like
Reply

Trust Dr?

Reply

She needs to have a mental capacity assessment, due to her profound hypothyroidism she will be at risk of myxoedematous coma, a life threatening event. Myxoedema effects mental capacity, why haven’t the hospital undertaken this? Her depression has an organic cause, you should ask this question and raise the question of clinical negligence. Only once your daughter has been appropriately medicated can the question of longer term psychological support be addressed.

27 likes
Reply

Hi thanks for the reply. She was admitted under the mental health act. They’ve said they don’t want to force meds as she’ll most likely stop when given the choice, I disagree and think if they can get her hormones better regulated her depression could be addressed later. How would they test for Myxoedema? Sorry if that’s a stupid question...

6 likes
Reply

Myxoedema is just another name for hypothyroidism, so they would need to test the TSH, FT4 and FT3. Although, if she's been of her levo for a long time, just her TSH will be enough, because it will be very high. But, no doubt they've already done that!

2 likes
Reply

They have, it’s immeasurable they said as it’s so high.

1 like
Reply

:'(

Reply

When we feel so ill and don't want to swallow yet another tablet which makes us feel worse, we don't want to take anything at all.

With Myxoedema we go into a coma and I doubt any of the doctors treating your daughter may be awae of this complication - before levo was introduced everyone was given NDT which was in use from 1892 up until they stopped prescribing it in the NHS, If people were diagnosed as hypo they were given NDT (in different forms of course) and many on the forum still take it.

They should look to giving her liothyronine (T3). I can tell you the difference this made to me was unexplicable and I have my thyroid gland. FT3 is most important to be checked.

11 likes
Reply

I told the endo that I am allergic to iodine, so he put me on Liothyronine. When he said I was normal I had patches of hair missing, couldn't sleep , my cholesterol was over 500and my Bp was way too high. That drug almost killed me me. I found an Md that put me on T3. My blood pressure and BP went back to normal, my hair grew back in, And I am sleeping. Make sure if she is allergic to Iodine that her doctor makes sure that It is brand necessary Cytomel. The generic is liothyronine.

1 like
Reply

I totally agree , I would also suggest not challenging her about this because she seems up for the battle of refusing her meds to gain some control in her life. You need to take a step back as hard as it is and let her use the passive aggressive with the professionals. If you let her know that you will no longer talk about her taking the medication she may open up and see you as someone to share her fears with and be a sanctuary rather than a sparring partner, i hope this makes sense at this terrible time.

11 likes
Reply

Hopefully if they can get the right amount of medication into her system she will respond better but I feel for both of you. They might have to treat the depression by other means so that they can then reason with her. I can't see them discharging her though under the circumstances. Please keep in touch if you can and tell her we are wanting her to get better soon.

2 likes
Reply

Oh Humanbean11

I so feel your pain. You can take a horse to water but you cannot make them drink.

Please tell your daughter that I once felt like her, I had lost all hope and the pain alone from the lack of appropriate medication was horrendous. But there is hope. I self medicate but even with appropriate levels of T4 levothyroxine things could be so much better.

Tell her taking is good, she is not alone. I'd be willing to talk anytime private message me for my number.

I lost my mum at a young age I wish I had someone to fight my v corner like you. X

21 likes
Reply

Thank you so much, your kind words struck a chord! I’m not sure if she’s finding new reasons to refuse but she says levo makes her itchy? I’m treading on eggshells... x

4 likes
Reply

I can understand the itchy on levo I was plagued with rashes. My hands would look like severe eczema and bleed often.

I have a 17 year old and a soon to be 20 year old both boys so I think I got off lightly (people tell me girls are worse than boys).

Tell her to get back on levo for a start and then we can sort out the rest.

Sending all my love and great big hugs x

Michelle

7 likes
Reply

It makes me itch too. Its a side effect.

1 like
Reply

Human bean, I wish I could find the right words to ease you or your daughter’s pain. Hugs to you and your daughter. Have you spoken candidly with your daughters doctors about your concerns? What is their response?

For the itching from levo, can’t you change manufacturers? My first thought is that some filler is the root cause of the itching. Are both you and your daughter taking the same brand?

Reply

She's right I have taken many different meds and they all have different affects....itchy, dry eyes, brain fog, but taking no meds is definitely not and option. I have hashimotos too

Reply

Can you persuade the doctors to try T3, ( Liothyronine) which will be quick acting and will start ease her depression and her low thyroid levels? It is used regularly in mental health situations but is also just what her body needs as she has no thyroid and it is pure active hormone. Since it is a new treatment for her, she may agree to take it. Worth a try? I have no thyroid and did well on it alone for some time but I now use the combination of T4 and T3. She could eventually progress to that. I hope this helps you in thIs terrible situation.

21 likes
Reply

I’ll certainly ask if that’s an option, I’d walk over broken glass if I thought it would help her. It’s just awful seeing her in so much pain and not being able to help.

4 likes
Reply

I agree with Hennerton. If your daughter has been refusing T4, then offering T3 would be somethings different, and should have quick effects. She may agree to something different.

Clearly T4 alone hasn't been right for her. If you can persuade the doctors to give her T3 for a while, she may improve enough to feel more positive, and then maybe they will allow her a combination of T3 and T4.

In any case, she needs T3 to start getting her levels back to where they should be.

4 likes
Reply

I’ve certainly seen shaws say before that everyone without a thyroid would do much better with T3 added to their levo (and we have a number of members here who can’t tolerate any amount of levo).

Liothyronine would probably make all the difference. And as others have said, there’s certainly a history to using T3 to treat depression (probably because the depression was there in the first place because of underactive thyroid). Absolutely worth a shot.

They may be reluctant because it’s expensive (only here in the UK - in the rest of Europe it’s very cheap!) but we’re talking about saving a life here and that’s priceless.

Big hug for you - this must be so hard to deal with xx

12 likes
Reply
3 likes
Reply

I completely understand how you feel. I have read just now that you actually asked how to get T3 previously. Did you manage it and did she use it? I think for anyone with no thyroid it should be automatically given with Levothyroxine and then your daughter would not be in this awful state. I blame her doctors for not realising what was happening to her. Keep fighting for her. You can help and don't let them fob you off with their nonsense, as basically they know nothing about what it is like to live without a thyroid. Ask to see her latest thyroid blood tests and I am sure T3 will be well below range. Good luck.

7 likes
Reply

Hi, we had no luck with GP and t3. She’s been numerous times over last few months with various symptoms but to no avail. I even rang to say how worried I was about her, they said they knew she’d stopped taking levo but couldn’t do anything as it’s her choice, I was gobsmacked! Surely that’s a cry for help??? She’s over 18 now so ‘on her own’ so to speak. Her TSH is off the scale and they couldn’t measure any T4 so prob no T3 either, I don’t know how she’s still functioning, it’s absolutely terrifying.

Reply

They have told doctors and endocrinologists not to prescribe liothyronine as it is too expensive but we are talking about someone's life here and I have to buy my own T3 which I have been fortunate enough to do. The very thought of swallowing levothyroxine again I couldn't do. Your daughter has my symptathy and anyone who is untreated/illtreated needs compassion.

As Dr Toft states in the following, that doctors seem to be very ignorant these days about diagnosing/treating patients and know little except TSH and T4 and give her doctor a copy of it.

healthunlocked.com/thyroidu...

5 likes
Reply

But have you asked hospital doctors, particularly ones for mental health, as I know I have seen posts here of members being given it by psychiatric departments. Obviously time is short but is there a way you can get some yourself very quickly? Would she take it? If not, it is a tiny pill and could be dissolved in water or juice. She may not know it is there. This is a dire situation and I cannot believe doctors are doing nothing to help. They interfere in unnecessary ways with ridiculous treatments like stapling stomachs in obese people and when someone is seriously ill, they allow them to waste away. Please try to get some via a private prescription if the NHS refuse.

10 likes
Reply

To be honest we’re in such a spin that T3 didn’t even occur to me. I’ll ask the hospital today. I’ll buy some anyway so I can have it on hand as an emergency backup. I am in total disbelief too, you’d think she was refusing pain relief for a minor ailment by the importance they seem to place it. Again thanks so much for replying, I feel a have a sliver of hope x

5 likes
Reply

I couldn’t take t4 meds anymore. Felt awful. So I’ve got a prescription 5mcg of Cytomel (in the Netherlands). Although Endo was prescribing 20mcg. I was very scared of the effect first time and I took only a half of a pill - 2,5mcg. Amazing!!

Now I slowly increase the dose, 2,5mcg per week. I take it 2 times per day. Now My total dose is 17,5 mcg . Search for integral specialist, or functional doctor, they can help with some info about dosing and prescriptions.

I wish you stay strong and sharp, and a lot of patience to your daughter!

1 like
Reply

Sometimes Pharmacists in the hospital settings are quite sharp. Do you have access to the Pharmacist overseeing her medications? Can you discuss the itching problem with them? If she is unwilling to listen to doctors may be the Pharmacist would be will to help troubleshoot the itching. Or ask for a Dermatology consult, anything to help ease the itching at this point ...

3 likes
Reply

I agree, that’s a great idea! I said to the nurse about the itching but I don’t think messages are getting through or being acted on. Because she is over 18 her family aren’t being included in anything even though she’ll come home to my care, it’s incredibly frustrating. I’ll call in to the pharmacy, hope they can help...

1 like
Reply

Unless you’ve had the itching you have no idea how bad it is so nurses are not the best people to talk to about it. Has she developed urticaria as well. Could be worth mentioning to her doctor. It’s another autoimmune complaint. Don’t want to add just trying to help. X

3 likes
Reply

Hi, you’re right, I don’t think they understand at all. I’m not aware of urticaria but she always wears long sleeves as she’s so cold all the time.

1 like
Reply

In that case she definitely sounds under medicated( previous to stopping meds) there is a few links on this site to urticaria good luck and my love to you both

1 like
Reply

I was very itchy when under-medicated. Since taking T3 that problem has disappeared (except for the rare occasion when I have taken a little too much T3). It is quite likely that the itching is at least in part (I appreciate that it may be allergy related as well) because she has been under-medicated, and now that her levels have dropped even lower, this is making her skin even worse. The itching may ease if she can take some T3.

Reply

humanbean11, so sorry to learn of your daughter's despair, and your understandable worries and concerns. Just wonder if Piriton could help your daughter with the itching? it's available over the counter, and it definitely helps with the itching I suffered. I take one tablet each night. Lots of love and hugs to you both xxx (((())))

Reply

If T4 only (Levo) is giving trouble then T3 only would be a good alternative. I was on T3 only for a few months (I have no thyroid) and I felt great - I never knew why I was taken off it. Many years ago psychiatric patients were given T3 to fix mental problems and I understand it worked very well. I get the feeling your doctors do not know much about the endocrine system that they wouldn't have tried the T3 only route. Perhaps you could try asking for that. You have a very terrible problem on your hands, you cannot always get people to do what is good for themselves.

6 likes
Reply

Thanks LAHs, wish me luck in getting T3. I’m going to order some privately anyway I just hope it comes quickly! I agree, there’s definitely a lack of understanding...

2 likes
Reply

My heart goes out to the situation you find yourself in with your daughter. It seems to me that the hospital doesnt seem very familiar with the mental effects of lack of thyroid hormones on the mind. You are right she is not in a state that reason can be used sadly. I wonder would they gently be using reason to coax someone to take their meds in the middle of a full blone psychosis. That I doubt!!

I do remember Dr Skinner talking in his book of a simular situation & the husband in the end crushed the meds & put it in his wifes food unbeknown to her until she felt better & then could be reasoned with. It worked. If shes under the mental capacity act already why cant they do that as a life saving measure. I know its not a long term answer but this is a life threatening situation. Are they waiting for her to slip into a coma?!!!

4 likes
Reply

It’s like chicken or egg isn’t it? Did the thyroid cause the depression or was that there anyway only made much worse...

Reply

I have no thyroid, and have been off my medication a few times for cancer trearment. I can tell you very categorically that it makes no difference at all whether you have depression before. To have no thyroid hormone at all is incredibly depressing and suicide inducing.

Early in my cancer treatment I was taking maximum painkillers and at first had the packets on my bedside table. At one point I had to throw them across the room (where I wouldn't be able. Move and get them) because the desire to overdose on them was so strong. I was just staring at them wishing to get at them. Even though I knew I wanted to carry on and live my life. In that moment you'll do anything to get out of it.

1 like
Reply

It's come up lower down the thread, so I just wanted to mention that being hypothyroid, particularly very very hypo as your daughter is causes depression, anxiety and suicidality, but the particular character is low self esteem. Feeling that you don't matter, and aren't as good or as capable as other people. Also an enormous amount of shame and guilt for being ill.

But also I've heard in Germany you can't get a diagnosis of bipolar disorder without first proving the patient isn't hypothyroid. Hypothyroid can cause a whole range of mental illness, including psychosis.

2 likes
Reply

Not taking her thyroid meds would make her extremely depressed/suicidal........it should be the first thing psychiatrists check and correct! Poeple have been sectioned and admitted due to thyroid not functioning or failing to take meds. I just dont understand their thinking that leaving her meds will make her better. It wont! She will decline further. They are risking her life.

Frankly if they dont want to force her sneaking it crushed up in food makes sense. When shes feeling better then they can have a conversation with her about it. I wouldnt normally advocate doing things like this but they are either going to force her or do it on the quiet.

I really hope they find a way forward and start emdicating her.....with either her original meds or ndt or T3.

Reply

I don’t know what they’re waiting for but they’re good at waiting. I asked for a meeting with her team on 21 Feb and it still hasn’t happened, I’ve chased every day! I’m at the point now that I’m just going to camp on the ward until something is done!!! They take obs every day and of course there is no improvement. They said they’re going gently as it’s best for her to choose to engage but so far that’s not happening. I honestly do think they’re waiting for her to get even more poorly!

3 likes
Reply

could you ask her to sign power of attorney form for you? then the medical team would have to include you in discussions, I've heard that can work well.

Also get PALS patient advice and liaison service involved, and or see if you can access a patient advocacy charity.

Keep putting pressure on.

Praying for you and her!

Reply

the power of attorney form is quite long. I went on a training day recently and was told everyone should have one with a trusted relative because the Drs don't know you and what you would want in these difficult circumstances

gov.uk/power-of-attorney

1 like
Reply

Goodness, LOTS to think about! I can suggest that but feel a lot of this is control as she's lost control over everything over the past few years... definitely worth having the conversation, even if it's something she chooses to do in the future. Thanks cm11

1 like
Reply

Am afraid the power of attorney has to be set up before you are incapacitated. As shes been detained under the mental health act it wouldn't be valid if you set one up with her now.

How about approaching Mind? Do they have an advocacy service?

2 likes
Reply

Yes I’ve rung mind, and young mind, and my works employees assist helpline... ill try their legal department, thanks

Reply

oh dear, sorry its too late for the power of attorney. Here is another advocacy service but I don't know if it would be appropriate. seap.org.uk/services/indepe...

Reply

Oh dear, how sad. She would need between 200 and 400 mcg of thyroxine having had a total thyroidectomy, but patients who have had a total thyroidectomy, nearly always do better on nautural desiccated thyroid. Have the doctors tested her FT3 levels? ReadDr A Toft's paper, Thyroid Hormone Replacement - blood tests not fit for purpose. It may be worth showing it to your daughter's doctors.

1 like
Reply

I don’t know if they’ve tested that too, I’ll ask... thanks Muffy

1 like
Reply

I have no thyroid, however my dosage is 100mcg daily. Problem is on a low dose, cholesterol rises as they are linked. Many docs don't know this!! I think under the circumstances,I would have to take the devious route and dissolve the T4 or T3 pills in water.

Reply

I hear what you're saying but right now I cant break her trust, I need her to feel in control and know that I'm right behind her (even though she's my baby and I want to fix her!)

1 like
Reply

Dear Humanbean11,

It would be a good idea, if you have not done this, to put your concerns down on paper and send a copy to the treating team leader, the head of psychiatry in your country, your local member of parliament, and a lawyer, indicating on all copies all the people whom you have cc'd, even if they deem the patient to be an independent adult. As a psychiatric RN (Australia) I know that the main way of getting through the group-think paralysis of psychiatric teams was via paper trails. They don't like their mistakes being written down. You can be very nice, but as long as you give details of what is happening in writing, and maybe photos of your daughter, they are more likely to take note. I would also ask for private testing of her T3 and B12 levels if the hospital is not prepared to do these.

14 likes
Reply

That’s a really good idea! I think a letter will do away with all of this tail chasing. I feel like I’m being fobbed off, I’ll let you know how we get on, thanks

3 likes
Reply

Good luck!

1 like
Reply

humanbean11,

I am so sorry to hear of your heart break, I am!

and my advise is a paper trail as well.

whatever a doctor or so called nurse is telling you, ask for it in writing. I guess they won't do that for you, as you are not the patient, so get a power of attorney, make it clear that in your daughters case a coma is on the books!! and you as the next of kin and carer need rights beforehand!

also get the advise of a lawyer and send letters of complain to the adequate offices.

I don't know how you stand with your daughter, maybe a shock can rattle her.....

tell her about the coma before death and the letter of "power of attorney" you need written and signed.

as , her in a coma, is not the end of anything, there is work for you to get through, all by yourself!

sorry to sound heartless, but maybe a shock will mobilize her.

but you know you daughter best, a shock like that is not allways the right thing to do.

my heard goes out to you, please let us know how you and your daughter go on.

keep strong. xoxoooo

ps

maybe you can read her all our responses?

xo

2 likes
Reply

I'm so sorry to hear your daughter has reached such a low point, and of course you're worried sick. Clearly Levo didn't work for her, I'd recommend she tries NDT instead, it's a more natural way to take all the thyroid hormones rather than just synthetic T4. You won't get that on prescription though, you'd have to source it independently online, and it's not going to arrive quickly enough (perhaps in a week-10 days). Your daughter does need thyroid hormone immediately. Waveylines idea is a good one actually, if your daughter is still eating/drinking, at least get the Levo to her crushed up.

4 likes
Reply

Thanks, I’m popping into hospital again today so I’ll ask about NDT, I’ll pay anything if it would help. I don’t understand why they are treating the depression before the thyroid, they’re too closely intertwined to split them!

Reply

Because they have no understanding of thyroid function, basically. If her thyroid hormone isn't replaced, she will die, whereas depression is a symptom of lack of thyroid hormones... I'd have thought it's a no-brainer as to what to treat first. They're being incredibly negligent.

6 likes
Reply

Yep, they’re going to get a letter outlining my concerns. I’ll hand deliver and send copies too.

Reply

If you are hand-delivering (which is an excellent idea), make sure that you write on the envelope AND the letter inside that you hand-delivered (in bold capitals and underlined). You don't want anyone to be able to claim that they never received it.

2 likes
Reply

The very best way to send such an important letter is by signed for mail, therefore you will have proof that the letter was received.

My thoughts are with you and your daughter at this difficult time, I’ve been so shocked reading through this and my heart goes out to you for at this awfully worrying time! I hope you will soon get the treatment she needs.xx

2 likes
Reply

You're highly unlikely to get NDT prescribed as it's blacklisted in this country... they'll tell you the dosage isn't reliable (lies, it's pharmaceutically prepared and just as reliable as Levo, if not more so). As long as you try to get treatment with doctor's approval, you'll likely get nowhere.

5 likes
Reply

This is all SO FRUSTRATING!!

1 like
Reply

Jadzhia you can get it in the uk on a nhs script. I have it prescribed. Its done on a named patient basis and is at the descretion of the doctor. Often an Endocrinologist has to under write it.

I agree its not an easy route but with T3 being so expensive its possible they will be more receptive as its miles cheaper!

Reply

NDT would def be the solution i would propose ...before my husband , daughter and grandaughters switched to it their lives were not worth living

2 likes
Reply

Your poor family! She's definitely at that point now, if not beyond...

Reply

Can you not crush T3 or NDT into food or drink or a yoghurt and get it into her.....slowly mind but once she feels better you can tell her what you have done

Reply

As I read the thread I was planning to suggest NDT, too. Lots off people have suggested T3, but for me NDT was a lot better. Different people find one or the other works for them.

When I first tried NDT, after 3 weeks of no hormone and 2.5 years of synthetics it was like a light switching on. Completely different experience. I can't remember how many doses I had to take the see the difference, but it was definitely soon. But with both NDT and T3 I expect your daughter will feel the difference after 1 or 2 tablets (as in, by the end of the first or second day).

I would suggest getting hold of both, explaining that doctors are rubbish and the only way you get better is by helping yourself. And then offer her to try either of these tablets. You may be able to get T3 prescribed by the hospital. But you will have to get hold of NDT yourself, as they don't believe in it.

I started on 1 grain per day in the morning.

2 likes
Reply

If the hospital still refuses to intervene, maybe you should ask your local paper to run a story? Billy Kenber of the Sunday Times/Times revealed the T3 price hiking and may be interested in yet another T3 issue. But a local paper loves human interest and sadly your daughter's situation is just what they like, particularly as it casts doubt on hospital competence. A bit of bad publicity can work wonders, or even local radio? I am not normally a militant type but your situation has made me very angry on your behalf.

13 likes
Reply

That’s not a bad idea but she’s already reprimanded me for letting family know she’s ill!!! I think she’s ashamed of the depression because of the stigma attached to it, that would be my last resort but I’m never giving up on her...

2 likes
Reply

Local publicity may not be good if daughter finds out ,may make things worse.

I think you need to get a psychiatrist involved .

Reply

I know... I couldn’t do that really but I’m so angry I can see why someone would, in different circumstances

1 like
Reply

I’ve contacted a T3 retailer but I’m unsure how many to order, any suggestions please? I said 100 to start but I’m sure I can up the quantity... thanks

Reply

Hi do you mind me asking where you live? I will check the formulary policy on T3 for you. I would definitely put this in writing and if you can ask for the CEO of the hospital trust and ask who will be responsible if she goes into a coma. With your daughter if she can understand say you will find her NDT and T3 and that many patients are very well on these. See if she will engage with looking at patient stories on NDT. Hope you get the hospital to act x

5 likes
Reply

Hi, we live in Northeast of England... thank you so much 😊

Reply

Hi Sunderland and South Tees are amber and Liothyronine T3 can be used by specialist. Newcastle and Gateshead it is a red Traffic light which generally means only available on hospitals. Hope I’ve got your area but if you need to find another one let me know or google your area CCG formulary liothyronine x

5 likes
Reply

She’s under gateshead hospital so red then, definitely worth asking / pushing though. Thanks so much for looking that up, I didn’t even know you could!!

2 likes
Reply

If she slips into a myxoedema coma ( unconsciousness) this is a medical emergency, in that case she will require intravenous medication and the only intravenous thyroid medication is liothyronine. Levothyroxine doesn’t come in an intravenous form. She is likely to become more confused and potentially psychotic without her medication, there will be decline in her cognitive functions.

I feel for you in this horrendous situation and understand that the hospital staff will only give you limited input as your daughter is an adult. I appreciate you must be so worried and so tired. I suggest that you push the potential negligence angle, as a doctor, they should first do no harm, not giving your daughter thyroid medication will increase her mental problems not improve them. Also ask what happens when she finally slips into a myxoedematous coma, what resuscitation plan do they have in place? This may focus their minds. Sadly if they are mental health professionals they may have limited knowledge of organic problems that present as mental disturbance. I wish you and your daughter well.

10 likes
Reply

Thanks, you’re all helping me to get battle ready, I am not giving up on my beautiful girl.

8 likes
Reply

You must be beside yourself, I'm so sorry you have both been let down so badly ~ your daughter needs T3 and I don't blame her for stopping the Levo ~ some people can't make use of it and it makes you feel poisoned. It's hard to believe that she's being left like this because of the stubbornness of GPs and medics under the influence of big pharma😔.

You have to take control of the situation yourself to prevent any further suffering for the poor girl ~ she just wants to be well and it could happen if they would just give her suitable meds. Tell her today you are sourcing the T3 and you will medicate her yourself with advice from the knowledgeable ones on this forum. People on here know more than any GP ~ take their advice👍. If they don't offer her T3 today forget it!

This is a situation they should not have put you in, but you can turn it around yourself. I know it's difficult to go against Drs as we're led to believe they know better, but as you can see from this forum, it's not always the case😕. One size does not fit all, and they're making no allowances for your daughters conversion issues, genetic disposition etc. and they never will!

Once suitably medicated with T3, more than likely her depression will lift, and given time she will get her life back ~ hopefully they will put her on IV T3, although I don't know if that's what happens. She has told them how ill she feels and they haven't even offered her a small amount of T3 to try ~ something that costs pennies abroad! What price are they putting on a young girls life? It's terrifying ~ I sincerely hope she gets treated enough to get her home, and then you can start again with self sourced treatment that works for her, whatever that turns out to be.

My thoughts are with you and I wish you all the best in moving forward and helping her ~ and I know people here will support you ~ be brave and don't let them talk down to you ~ she may be 18 but she's still your daughter and you know her best. Please update us on how she's doing, good luck and (((hugs))) to both of you💕xx Mamapea x

3 likes
Reply

That all makes so much sense! I'm going in to see her shortly so I'll broach the subject face to face, thanks so much for your reply :-)

1 like
Reply

Make sure if you can, that she understands that there are many people on here who have conversion problems and cannot tolerate Levo and she is not alone in this ~ also that many (I have) have stopped the Levo because of the way it makes you feel ~ I only restarted because I had children to care for, and I was given no choice of alternative meds. I have been hospitalised twice while I was taking large doses of it, and was STILL hypo! It's useless for some people ~ she's right!👍

Your main aim is to persuade her to get herself sorted enough by whatever means so she can self medicate at home. I wouldn't hold out much hope of them prescribing anything else ~ they've let her get into this terrible state so far, after all. I have been treated like a mad woman myself for requesting them 😨.

In fact, it's wasted 25 years of my life, so don't let it continue for her a minute longer ~ you have the advantage of this forum, which I didn't have back then. You can do this!!🌟. Everything will be ok, her appetite will return ~ it uses up energy to digest food, and I know in my case, nothing would go in, and nothing would come out ~ my body had shut down, and I was still taking the stupid Levo! I just had loads of waste of money procedures, labelled with every AI disease known to mankind, (including Sjogrens) and given a carrier bag full of big pharma meds to take ~ which ALL made me worse! 😳.

She needs hope, hope, and more hope that Levo is not her only option forever. 💕 (((More hugs))) 💕 xx

1 like
Reply

Hi Humanbean11, so sorry to hear of the trouble you’re daughter is experiencing. I’m tempted to say not to crush up t4 into her food as she will be very resentful afterwards.

I would suggest you make sure her Drs are aware of Professor Russell T Joffe’s paper called ‘Hormone treatment of Depression’. It’s on Pub Med PMCID:3181966

Just type into google the PMCID no and it will come up. There’s no http tag.

It says T3 is the only useful hormone bar none in the treatment of depression.

Make copies and give to everyone of the Drs who are in charge of her case. If they then don’t take heed then this is a case for negligence.

Because of the dogmatism surrounding the use of T3 it appears no one wants to make a move until she falls into a coma; but that’s just not good enough.

Hope this helps and good luck

9 likes
Reply

Thanks so much, I’ll google that now

Reply

Hi, I think, if your daughter was admitted under the mental health act, then the doctors havea duty of care to see that your daughter is given the correct treatment.

6 likes
Reply

I have Hashimotos. The doctor put my Levo dose up to 200mcgs a day. I couldn’t function at all and felt as if I was being poisoned. I now take 60mcgs of Liothyronine a day and feel well and healthy. I can’t believe they haven’t let your daughter try other alternatives. I’m so sorry. Bless her.

5 likes
Reply

She was only taking 125 levo prior to stopping and felt awful for pretty much the whole time! I'm writing to the hospital now as they don't listen :-(

2 likes
Reply

I wish you success and better health for your precious daughter. 💖💖

I fought for five exhausting years to get a prescription for Lio.

2 likes
Reply

I can sympathise with your daughter as i was far more unwell on levothyroxine than before being diagnosed when TSH was 100. I have my thyroid gland. I have hypothyroidism.

I really do not know why a little bit of compassion cannot come forth from doctors treating very unwell paients. They just refuse to believe us if we say levo isn't improving our health. Have they tested her Free T4 and Free T3 to see the level.

They should give her T3 to see if she feels better as it is T3 alone which is needed that is needed in all of our T3 receptor cells. Someone who has had their thyroid gland deserves to be given T3. Your daughter could be a poor converter of T4 and the reason she hasn't felt well.

Endocrinologists are permitted to prescribe T3 if it is in the interest of the patient. Why let someone suffer because they refuse to prescribe the only Active Thyroid Hormone.

We've had other members, not often, who've said they feel that levo is poisoness to them.

This is an extract from one of our Advisers/team paper:

The newly proposed concept of relational stability assigns maintenance of T3 stability equal physiological relevance to central set point control. Where conflicts between the two regulatory elements may arise, T3 stability takes priority over set point maintenance. Importantly, this indicates that the set point is not only dramatically adjusted in extreme conditions such as the non-thyroidal illness syndrome, as has long been recognized (86, 87), but may be modified as part of an early response of the system when challenged by minor disturbances.

frontiersin.org/articles/10...

5 likes
Reply

<website details removed by admin in accordance with posting guidleine 24>

Natural dessicated thyroid from asia.

Theres Thyrovance on amazon. Its natural dessicated thyroid (cow) thyroid. I dont know if you can order it in england but it might be worth the try. Why dont they give her cytomel or t3? Sounds like a fight with the prescribing doctor who doesnt want his pride hurt. In the U.S they put them on a hold and get a court order and force the meds. Bless your angel.

1 like
Reply

I know it was a long time ago but I was in myxoedema coma after being treated for depression for 2 years due to wrong diagnosis. I actually found the fact that I slept a lot comforting to the depression and in its way the lack of hormone was helping me mentally. Once I was in the coma all hell broke lose and t3 administered......2 weeks later I was a different person, mentally and physically and my neibours did not recognise me. She may be refusing t4 but unless she has signed while in mental capacity it is irrelevant!

3 likes
Reply

Yes it was the same for me at least when I was asleep I was out of pain. Of course I now know I was slipping towards coma, I couldn't stay concious more than an hour.

Reply

She's always tired, I'm so worried.

Reply

she will need to sleep to allow her body to perform simple functions, tbh i preferred to sleep than be conscious and in pain, i couldnt think straight.

reallyfedup123 doesnt know this but it was her straight talking that helped me she just said stop bloody procrastinating and start taking ndt, it cant be any worse than you are now lol well i did and look at me now :) i couldnt read, research, enter into a dialogue etc then i could hardly stay awake i needed someone to say DO THIS TRY IT YOU HAVE NOTHING TO LOSE AND EVERYTHING TO GAIN. So i am saying the same to you get some ndt into her preff dissolve under tongue as my digestion had all but packed up and i was not absorbing anything (another thing that improved almost immediately) ask your daughter from me to just take a leap of faith and give it a go.

She has nothing to lose to try and i will be so bloomin angry if like me after 7-10 days she suddenly starts feeling alive again, it gave me a glimpse of me back again.

Those drs have no idea they just think we are mental, depressed, weak morons, they are the bloody morons.

9 likes
Reply

I love your reply! And I'm so happy you are feeling better, I'm suggesting NDT to her today, I have some on order, and I'm going to ask the hospital to prescribe it so she can start to take it as soon as she's ready (now, please!!)

Reply

i doubt they will prescribe it or be happy at her taking it, you may need to be crafty to begin with, if it works then you have some results to argue with. You must prepare yourself to being forced to buy it yourself like many others. None of my drs or endos will have anything to do with ndt but agreed the miraculous transformation in me, thats why they prescribe t3 for me xx ndt can take few weeks to arrive and i agree sooner rather than later i have pm'd you x

2 likes
Reply

I want to say I agree with not sneaking the t4 into her food. If my family did that to me, I would feel very distressed because I would feel like my closest and dearest are lying to me and going against me as well.. when it’s already hard going against the doctors. Also I would think my family are possibly not hearing my reasons for not taking the t4 and respecting my choice. I have been weaning myself off t4 and feel much better. T4 seems to make my body overly sensitive, giving me allergies and rashes. To the point where eating feels like harming my body. So I think I can see where your daughter is coming from. I am colder and it’s easier to feel weepy and have negative thoughts, but I combat these issues with regular exercise to boost my body heat and metabolism and I haven’t felt better in decades. I had a check up and my TSH was 179 (I still have my thyroid) which I expected because it is winter and I’m currently stressed from revising for exams as well. The docs want me to take more T4 but I’ve refused as well and am waiting for the weather to warm up for another check up to see what my TSH will be then. I also need to push the docs to look into t4 alternatives if my TSH doesn’t come back down. Please talk to your daughter about her plans and ideas for her condition if you haven’t already. In her mind she may be thinking.. you’re not the sick one, you don’t understand and be very frustrated if you try to force her to take the t4. I speak to my mum regularly about my situation and I’m very lucky to have her as my rock when the world feels like it’s against me, at least she isn’t. Of course I still have my thyroid so our situations are very different.. I’m hoping my thyroid can recover. We’ll see! Also, the adrenal system takes over when the thyroid isn’t working, so that’s probably what is keeping me and your daughter going, but the adrenal system can only hold out for so long before it’s fatigued. Fingers crossed for your daughter and you!!x

3 likes
Reply

Hi, I would never force her to take levo but she does need something, I'll talk to her about T3... it's interesting that you say 'eating feels like harming my body' as she hasn't been eating well at all and I wonder if she feels the same. I'm totally in her corner and she knows that, I wouldn't sneak it into her food even though that's what I may want to do - this isn't about me.

I hope the better weather helps you to feel a bit better, take care x

2 likes
Reply

Oh yes, also I check my blood pressure and heart rate on a daily basis to make sure I’m not heading into a coma. This was my only fear coming off the t4. It could be something you can implement so you can both monitor her condition. I’ve had my heart rate as low as 33 in winters when I felt very poorly and “error” on the blood pressure monitor because it was too low, still didn’t go into a coma. This was when I was taking t4 as directed. I currently use an app on my iphone called icarebloodpressure. I’ve found it accurate and would be very accessible for your daughter x

Reply

Hi humanbean.

Truly sorry to hear of your daughters battle.

I’ve sent you a pm.

Nick.

1 like
Reply

My thyroid was removed 2009 and no one told me I would need medication after. I went from fit strong woman to a pain racked shuffling wreck. I slept all the time and was slipping towards a coma. I can not take levo I can't tell you how ill I was on it and I didn't think the pain could get worse but it did. The itching is unbearable and I think for me it gave me nerve damage all round my middle even now I can't bear clothes tight on my skin. Ndt was the start of my getting better I'm now T3 only. So tbh I get where your daughter is coming from. I think a letter to her team stating T3 would deal not only with her thyroid but also the mental torture, that's what it feels like. In the letter you must state you hold them responsible for any further decline and you want the letter put on her medical records, state that their approach is not working and there is plenty of evidence to show T3 can work. If they try it and it doesn't work they are at least not negligent in their care. You can also demand a 2nd opinion. I think Ndt a safer more natural start, within a week I suddenly woke up I could walk talk I cried buckets because that simple tablet was all I needed not all the other stuff they pumped me full of, turns out I didn't all those meds or a hysterectomy knee hip replacement. All I needed was the right thyroid meds I would rather sleep my life away than try levo again. I am by no means back to the powerhouse I once was but I do have a life now. You have nothing to lose trying them let's face it it can't get worse. I lost 6 years of my life and it makes me angry, even more angry that it is still going on x I am sending you love and the strength for you to help your daughter x

10 likes
Reply

Thank you so much for your reply, it means a lot to know people have been through similar but so angry that this still happens! A second opinion is a good idea... x

Reply

First of all how old is she?

Reply

Hi, she's 18.

Reply

Hi, I am so sorry you are going through this. How old is your daughter? Can she read some if the posts on here, where she will see that getting well is a process and not an easy fix for everyone. Explain that if she goes back on Levothyroxine you will be able to work to get her better, it may eventually mean changing her meds to something else, but she has to start somewhere and levothyroxine is the best starting place. Then once she is a bit better she can try other things. Has she had vitamins and minerals tested these all need to be optimum for good conversion. I hope you manage to persuade her, as not taking any meds is not going to help her.

Reply

I imagine that after this ordeal her vitamins will be completely trashed, and it will be a process to build them all up again.

The biggest issue is that doctors won't help with this, Humanbean11 and her daughter will have to do it themselves.

1 like
Reply

Hi - I don't know if any tests have been done on vitamin or mineral levels but I would doubt it, I'd have to ask my daughter if she knows...

Reply

If she's been struggling on Levo for a long time, and is now off all hormone for a while there is almost no point in testing, because we know they will be bad and getting worse all the time.

Unless you can use it as leverage with the hospital, as they will have to work hard to keep her vitamin numbers stable - but I doubt they care :p

I've been off all hormone for 4 weeks in the past, and my vitamins stayed okay, but they were always okay before and I've been lucky with it. But I guess you are talking about longer time frames than this? I actually felt better during that time, and 4 weeks was as long as I dared, but I was already in bed all day at that point.

The vitamin stuff is more for afterwards. There is tons more that you can do for your daughter than doctors will do. Self medicating with T3 or NDT is one of them. But testing and treating her vitamins is another. I expect she was on the wrong dose of Levo all along :(

Will she be interested in hearing things like that, and getting into the fight of it? It sounds like she is really fighting now, and is very brave!

3 likes
Reply

Plan Y: I am in the states & of course don't know your system but ... when I worked as a government hospital based nurse in my younger days if I really did not like the pace of action towards a patient situation I would go over to the intermediate ("step down") intensive care unit & speak with the charge nurse. As they really did not want the patient to end up on their unit they would come over to the ward & get involved!

5 likes
Reply

Wow I'd never have thought of that! I'm in the UK and imagine the critical care team would be too busy to do that but anything is worth a go?!

1 like
Reply

I know that people who are sectioned can be forced, against their will, to be given mind-altering drugs. The elderly are often given "chemical cosh" treatments to reduce agitation (make them more pliable and easy to manage in other words).

So if these people can be forced to take medications why can't the powers that be force your daughter to be medicated with thyroid medications?

Reply

I’m so sorry you’re in this situation. I feel terrible for both you and your daughter.

I’m not sure I can offer up any more advice than what’s already been suggested.

I would definitely be looking into both NDT and T3 as an alternate option in the immediate term.

There is also such a thing as Liquid T4 which may remove the possibility of itchy reaction from a bulking agent? Possibly worth a try?

I think putting things in writing to the GP, Endo and Hospital is very wise outlining your concerns and your specific request to Medicate her using alternatives. I agree that doctors tend to act quicker when there is threat of negligence and blame for unexessary outcomes present.

It’s terrible you should even have to do any of this. 😢

Is your daughter aware of what this is doing to you? I know myself when feeling very ill and down I tend to be very selfish and think only of myself but if there was one thing to knock me out of that frame of mind it’s to realise I’m hurting other people. I’m sure you’ve already had some serious chats with her but if she realises what it’s doing to you too it may give her some motivation to help herself?

Someone said to crush meds into her food - a couple disagreed with that approach. Personally my view is it’s a thing you need to be prepared to do if worst comes to worst. Your daughter is 18 and technically still a child. Not by law but let’s be honest - I’m 35 and a completely different person to who I was at 18. I would take such drastic measures if I needed to with my child. I’d rather a resentful daughter in my life who is alive and well. Plus If it helps her then she may actually be grateful rather than resentful and distrusting. I would say that’s a last resort though.

I do hope you find a solution soon. My thoughts are with you. Please keep us informed xx

3 likes
Reply

Hi Humanbean11, I've just gone back and looked at your old posts to see if I could find anything. I'll summarise them here in case there's anything useful to you today.

Looks like you posted several times in the 6 months after her thyroidectomy. Her first set of blood tests didn't look too horrible, but her freeT3 was very low, and she desperately needed T3 (also called liothyronine) added to her Levothyroxine.

In your previous post you showed a graph of all the results you had, and the TSH was constantly increasing over the 6 months. I would think this was her body slowly using up all the hormone her own thyroid had made, and all the other chemicals and processes downstream. Was her dose never increased in that time?

It sounds like she was discharged straight back to get GP after the operation, rather than being regularly seen in hospital until she got stable. It meant you guys were left fighting for treatment alongside other people trying to get a 'diagnosis' for being hypothyroid, without it being taken into account that she was a recent thyroidectomy patient!

This is an absolutely disgusting show of negligence :( Your daughter has been given the absolute minimum of aftercare, and she has slipped through the cracks! A TSH of 25 while on medication is horrifying, and whatever doctor saw that number should have given her an immediate dose increase, and invited her back every 6 weeks to get further dose tuning, probably increases.

I'm not surprised your daughter is despairing. She's been put through absolute hell by the medical profession :( This is the worst kind of torture, and she must feel like she's been going mad, as her whole body and brain stop working for her!

I see that you were discussing buying your own T3 as long ago as two years. What has stopped you from taking the plunge and self treating? I always comfort myself when I'm frightened I might make a mistake by remembering that doctors also hurt people. Where your daughter is right now is the absolute worst you can get with mismanaged thyroid hormone.

I'm sorry to speak so bluntly, your daughter has been absolutely let down by doctors at several points and it makes me very angry :( I've had a similar experience with being left with stupidly high TSH for months, and its horrible to think of a young person having even worse! I think you would have a good case to take them to court for negligence based on the information you've posted here. Many people would like to do so, but their suffering was sanctioned by NICE guidelines, so there's no point. In your case the guidelines were substantially ignored!

7 likes
Reply

i was terrified to self medicate as back then i still thought the drs knew what they were doing!!!! wow when that misconception gets lifted its a shock. I realised i was going to have to do it myself and it was frightening, mad isnt it, i was scared of taking a single tablet compared to the 8x co codamol and tramadol prescribed for my pain daily. 4 each of Mebeverine & lopermide for my chronic ibs and digestive problems ( i had diarrhoea for 6 years with angonising pain and cramps) Too many anti depressants to list in high doses, steroid creams for the itching, diazepan x 3 for the anxiety, amytriptiline for night time pain/also antidepressant, they wanted me on statins, i was taking so many pills throughout the day, some with nasty side effects....and yet i was afraid of ndt, it makes me laugh now, within weeks i stopped all the other tablets, no withdrawal from them which proves to me i didnt need them or that they worked!

What i still struggle with is when a dr proceeds in one direction only and the patient gets worse not better they seem unable to consider an alternative or that they might have got it wrong or they think we are making it up. The fact that for 2 years the nhs and teaching uni paid me to give talks on thyroid diagnosis, treatment and what happened !!!! i am a lay person who has had to learn with help from others, the drs however think they have done all the learning they need..... steam coming out my ears now xxx

8 likes
Reply

Great post Endomad! I was terrified, too. I was more terrified taking my first NDT tablet than I was going off all hormone for weeks. I was almost passing out with fear when I took the first one! And the fear continued for ages. It was months before I knew I was going to get a lot better, and the fear started to go away.

Now I'm two years in and not really scared at all, but it's a long hard journey. We are really strongly conditioned to believe doctors know what they're doing. But they're just guessing based on a few flimsy arguments and guidelines.

9 likes
Reply

You’ve both got it exactly! She was only 16 when I first asked about t3 and if it was me and my body I would have taken the plunge. She was very understandably terrified of going against professional advice so we never did try, I bitterly regret not pushing harder back then. I’m tempted to get my graph back out to update it! We have discussed t3 again recently and she’s open to trying this time but is still scared of going against the doctors. This time I’ve ordered it anyway, then we have it when she’s ready xx

2 likes
Reply

It was a splendid graph!

It's a really hard decision for the two of you to have to make :( My heart really goes out to her having to go through this at such a young age xx

2 likes
Reply

Your daughter has other issues...emotional , and it appears psychological. That needs to be addressed.

As with anorexia, pleading will accomplish nothing.

Her age is..?

Reply

Earlier in the thread Humanbean11 says 18. I think she was 17 at the time of her thyroidectomy, or maybe 16. It was roughly 2 yes ago.

I'd be very cautious about making any comment on her emotional and psychological health without taking into account what it feels like to have zero thyroxine in your body.

This young woman has been through a terrible ordeal. Two years ago she walked into an operation completely trusting doctor's decisions and believing they would make her better. She's undergone two years of very negligent treatment, with her TSH constantly rising to a high of 25 after 6 months, and we don't know what later on.

I'd say she's trying her best to get some control over the situation after years of suffering. Bio-chrmical suffering, by the way. Although it has horrible emotional and psychological consequences.

4 likes
Reply

I didn't mean to offend...but was considering which came first...the emotional state as the cause and now surely the lack of a thyroid being the reason...

Reply

Sorry to bite your head off Cleo1031!

It just makes me so sad and angry that people are being treated with such negligence. Looks like Humanbean11's daughter may have been shockingly undermedicated for years, with no thyroid :(

3 likes
Reply

I know you didn’t mean to offend, and frankly you haven’t. She also has sjogrens so is in constant pain, on top of that she’s been undergoing tests on her heart so has had way too much for someone her age to deal with. Emotionally she’s been fine up until her health took a turn a few years ago, diagnosis and treatment took way too long that she’s given up, as she feels the health professionals have done.

2 likes
Reply

I have always said...the Doctor's framed certificate doesn't tell you much...even the dummies in the graduating class get a certificate.........

1 like
Reply

Walk a mile in someone else’s shoes eh? They should learn to listen first 🙄

Reply

You are more polite than me, I’m feeling very emotional myself and judgemental comments don’t help. However I have more to worry about...

2 likes
Reply

I'm glad I didn't offend you, Humanbean11. Sorry for being blunt and rambunctious in your thread. You have so much to deal with right now!

Reply

You definitely didn’t, quite the opposite, I promise

1 like
Reply

Of course she has other issues & emotional, mental & physical issues. She is extremely low on thyroid hormone. Thyroid hormone affects every part of the body

1 like
Reply

So much great advice. I just want to send you supportive hugs

1 like
Reply

Humanbean11 I am really feeling for you. I've had a total thyroidectomy myself but haven't felt as low as your daughter obviously is and I wouldn't like to give any advice on the medical side of things but my local hospital trust has a patient advice and liaison service for any patients experiencing what they consider to be poor care. Perhaps you could find someone in a similar service at your hospital to act as an advocate on your behalf? A two-pronged attack maybe? Good luck and I hope you start to get some positive movements soon. You have lots of people who can give you support here.

2 likes
Reply

I rang them today, and her GP, and hand delivered a letter to the hospital which was copied to our local counsellor... many prongs!

2 likes
Reply

T3-only as a treatment method can have almost magical effects when the patient feels nothing but horrible on T4. Perhaps you could demand that the doctors in this facility give her T3 in liquid form for a few days, orally or IV?

There is no question in my mind that she is incompetent to direct her own care, because that is what extreme hypothyroidism does to people.

3 likes
Reply

That's tomorrows battle - wish us luck!

4 likes
Reply

Good luck Humanbean11, we are all rooting for you and your daughter.

I hope for a magical experience for her when she tries T3, as it has been for so many here.

2 likes
Reply

Me too 💕

1 like
Reply

Dear HB11

My heart goes out to you.

I have been thinking about you and your daughter all day...

Life is hard and life is cruel. I know my dear mother suffers a great deal when she has seen me ill... I can understand your distress.

When one reaches rock bottom and the last thing you have to cling to which is Hope, slips away....when you lose that glimmer of light everything is too overwhelming. You just want the hurt to stop. Withdrawing and shrinking back and accepting you've been beaten because you are too exhausted and too numb to cope with anything is perfectly normal. We are, after all only human!

When Hope feels lost and there appears to be no end in sight we have to tell ourselves that the last thing we have left to save us is Love.

The Love that others feel for us...

Giving up will hurt those we love, and those who love us beyond measure.

Looking at the amount of replies to your post, 108 when I last looked...mine will possible be 109, if somebody else does not beat me to it! We are all replying because we Care. Your daughter must know this. She is not alone in her struggle. We all face our own Everest in varying degrees and right now your daughter is up against it, she's at the North Face...

The Power of Love is all around us.

When I read some of the trials and tribulations recounted on this forum I experience so many strong emotions; above all I feel care and compassion; in my mind's eye having read your words, I think on them and try to focus on finding a clear path...

Distress and loss of Hope clouds our minds. The effects of this illness grinds us down physically and mentally; it can be very hard.

However, if your daughter can know how many people are responding to you...how many people are sharing their own experience and advice with you and how many people are thinking of her...and of you...it might help her to think again... To think again of what she is turning away from.

With care, Hashimotos-tailored Nutrition, an improved gut biome, assisted by huge doses of Probiotics, which in turn will improve her Immune system..which in turn will improve her vitamin/mineral/trace element uptake and absorption... thereby providing her with the necessary cofactors to help her benefit from thyroid replacement... She can come back. But she has to want to keep fighting to come back. And she has to fight because there are those that Love her and want her to win.

There are beautiful things to live for and to experience. They are just waiting for her...from baking her own delicious blueberry muffins, to seeing a beautiful piece of art that is so inspiring you have to wonder how it was created by human hand, to feeling the warm touch of your cat's soft silky fur, to hear the purring near your face as she sits on the sofa cushion behind your head because she wants to get as close to you as she can, so much that her whiskers tickle your ear...to walk outside in the snow, to see the landscape with grazing animals...to feel the winter sun on your face, to see a rainbow against a slate blue sky, with the brightly lit fields just beyond...to sit in a scented garden and smell the strong perfume of old fashioned roses, a smell that you can almost taste...to jump in the warm Mediterranean sea, to feel the buoyancy of the waves and the water with that lovely salty taste... All the places still to visit and the people yet to meet...

There are so many things she still has to do and experience.

With Love she can be brought back.

She must know we are all thinking of her.

So many great people, Drs included has become ill, close to death yet they have used their powers of reason and with courage have pulled through. Your daughter can too. She could then tell her own story of recovery, in good times me and help others in turn.

She can do it.

With your love and everybody else here to advise and empower, She Can Do It.

Much love

Poppy the 🐈 and Me XX

5 likes
Reply

Thank you so much, I'm overwhelmed by the care shown on this forum from total strangers. I am passing on these messages to my beautiful daughter and hope that she reaches that summit to enjoy the meander back down the other side xx

2 likes
Reply

We are all thinking of her..if she wants an electronic pen friend, just to send her beautiful pictures of uplifting things you know where to find me. 😼

2 likes
Reply

Dear Humanbean11, may I private message you as I have a very special idea?

Poppy the 🐈

1 like
Reply

Of course 😊

Reply

You be her advocate. Try to get doctors to give her a natural thyroid medicine Nature Throid is what I use. I at one time also refused thyroid meds. You need to explain to her she will die without thyroid hormone. Thyroid hormones control every cell in your body. I took away gluten dairy and sugar. I eat a paleo life style. I started taking Nature Throid and felt so much better. She needs to read books by Isabella Wentz. She needs to be her own advocate if she wants to get better. I can send a vitamin list of things I take and it may help her. Levothyroxine is the worst thyroid medicine. They changed fillers and they aggravate your tpo antibodies. There is Armour West Throid and Nature Throid

She has to take Thyroid meds or she will stay sick. Email me if you want vitamin list. Pattiweston76@yahoo.com

1 like
Reply

There is so much excellent advice below here that it isn't necessary to repeat it. My heart goes out to you in this dire situation and you must be exhausted with the fight. Is your daughter eating still as her blood sugars must not be allowed to drop. Just a little and often will make a difference until you can get T3 or NDT into her. As she is so very ill and depleted, her adrenals will be struggling and her cortisol levels will be affected.

Don't let them fob you off with the depression thing (sadly most of us thyroidites get anti depressants thrust on us instead of appropriate treatment). If I were closer, I'd gather people together to support you and stage a protest. The hospital are being negligent and there is no excuse, regardless of your daughter being eighteen. Please know that there are so many of us thinking of you and your daughter, tell her lots of people understand exactly how bad mono therapy Levo can be and we all want her to turn the corner. Sending heartfelt prayers xx

4 likes
Reply

Thank you so much, I just hope we're close to turning the corner... thanks for your kind wishes xx

1 like
Reply

Sadly, it is her choice and you really don't want get her sectioned if you want to keep any sort of relationship. Could you get her to take NDT?

Reply

I was on levothyroxine and synthroid for 12 years. I don’t think it ever did a darn thing. I switched to dessicated a year ago, and wow what a difference! It worked for me! I was also diagnosed, finally, with Hashimoto last year. All signs and symptoms point to me having it since a baby. I am 32, a long time to go undiagnosed. I also take lugols iodine and slelenium.

2 likes
Reply

Dear humanbean,

If she won’t take medication try giving her all the nutrients the thyroid needs in order to function. Vit B6 is essential, if deficient the thyroid slows down, if seriously deficient the thyroid stops altogether. Babies use up a great deal of Vitamin B6 in the womb so thrush which develops when B6 is low is very common in pregnant women; it's lack is also responsible for caries (holes in teeth) developing then, so 12 months free dental care is given after pregnancy. The lack of B6 is also the main cause of 'baby blues' and the severe depression that can come after pregnancy which can lead to outright psychosis. Vitamin B6 psychosis is identical to fast thyroid psychosis thus psychosis is not really a mental illness at all but a physical one of thyroid disruption. B6 (50-100 mg) must be taken with magnesium (500mg) and 15mg zinc. as they are synergistic and only work together. Half a teaspoon of Epsom salts in a warm fruit drink is equal to 500mg of magnesium. This is the best and fastest way to take magnesium (that’s official.) Milk or calcium tablets can be taken to keep calcium levels up, being winter Vit D3 is also advisable as a lack of this leads to depression which is common in the winter months. It must be be D3.

Vit E deficiency means the thyroid works at only 5% efficiency, but it CANNOT be taken if blood thinners such as coumadin, warfarin etc are being used, or if the blood pressure is critically high, or a rheumatic heart condition is present. Can lead to fatality if used with the last condition, otherwise brilliant for all other heart conditions. You will know if you have a rheumatic heart condition as will your Doctor, it's very serious. A low dose, about 50 mg of Vit E daily brings high blood pressure safely down to normal, it never goes below normal. Increase by 50mg weekly until taking 400-600 mg daily. If BP already normal take 200mg daily then increase to 400mg next week then 600mg the week after. Can lower dose onwards.

If palpitations or a fast heart beat occurs and it is associated with uneasiness, fear, disquiet or outright panic it usually means the thyroid is beginning to move into the fast zone. (Normal thyroid goes to a slow thyroid which finally goes to a fast thyroid. A slow thyroid always precedes a fast thyroid.) Those on the cusp between fast and slow can experience symptoms of both. Heart palpitations, unnatural fear/uneasiness etc. begins when the thyroid starts to become fast. If unchecked it can lead to full blown psychosis. Vit A is extremely important here:- iodine is absolutely essential to thyroid function but can trigger a fast thyroid when the thyroid is running slow. Vit A MUST be taken with iodine to prevent this from happening as it can cause a fatal heart attack.* Totally safe with Vit A 50-75000 iu.

Iodine can be obtained from kelp or other seaweed, or can be bought from the web as Lugol’s solution. Try 15%, take as directed, or 4 drops daily. Try ‘Lugol’s Solution 15%’ on Ebay or such. It pays in addition to the above to take a general supplement, and brewers yeast and/or wheatgerm. Try looking at ‘natural healing for thyroid health’ on web too. And take Vit A with it.

Really hope this helps - Maje

*Note:- A fast heart rate can sometimes occur in daily life regardless of the thyroid caused by a lack of vitamin B1.Take 50-100 mg when occurring usually stops 15 minutes or so later and heart returns to normal.

1 like
Reply

That’s a lot to take in, thanks so much for taking the time to reply in so much detail... I’ll try and digest it all tomorrow 😊

Reply

If her thyroid was removed a couple of years ago, then is this good advice to promote thyroid function, giving the nutrients etc the thyroid needs in order to function - is it relevant?

1 like
Reply

Sorry, rough day, I missed the the thyroid being removed bit. Being honest I don't know if it would help, but it probably would because many of the symptoms mentioned appear when those nuitrients are deficient, eg lack of B6 etc produces depression, loss of memory, bone and teeth problems, heart problems psychosis. May well be worth trying, it will do no harm, the body needs these things possibly more so when the the thyroid is missing. Iodine by the way can be decoloured by adding Vit C to it so less messy. In your situation I would try it. Hoping for the best for you, Maje

1 like
Reply

Thanks Maje x

Reply

I am sorry to hear about ur daughter being so unwell and not taking her medication. Your daughter needs to take her Levo, due to not having her thyroid which works for many organs in her body. So medicine is doing the work of her thyroid. It can take along time to adjust. Your thyroid has stopped working and has been for a while so now medicine needs to do the work. I presume your daughter has depression this will not help and it maybe playing a big bit of her not feeling well. I never thought depression can do so much but it very much does. I have had problems for 5 yrs now. She might have high blood pressure, tired all the time , so much u sleep a lot. I have several other problem, tell her she needs to start somewhere and u thyroid tabs have to be working with medicine can take months. Just take that step to have a better life, it is not easy, but don’t give up. Speak to a counsellor so u can understand why u feel this way. Take care Pamela xxx

1 like
Reply

HumanbeAn

So serious. Counselling or better still TalkingPoint not with a long term suffered.

I fealt dreadful till the team at Manchester Royal sorted out all the things that go with thyroid, and the eye clinic at the Royal Hallamshire have come up with a simple regimen that works for the dry eye problems.

In US at moment, can someone volunteer to talk to your daughter?

Regards

Paul

1 like
Reply

She is speaking to counsellor so if she can open up that would be a good start... thanks

2 likes
Reply

Key is your daughter can feel well.

But.. it sounds like as in my case the autoimmune has/is damaging more than / system.

Before getting properly treated I collapsed several times.

Don’t want to get Trolled for this comment, but a jump to T3 or Natural Thyroid May just mask other problems.

If you pm me we can chat but I am in a time zone 7hrs behind.at moment.

Shows the turn around that can happen.

1 like
Reply

My daughter at 8 years old had thyroid cancer and had her thyroid removed. She was given generic thyroxine, she is now 28 with test all the time all these years she is doing good. what meds are they giving her to make her sick?

Reply

That’s really tough for an eight year old, so pleased you’d doing so well 😊

Reply

sjogrens must be what is making her sick not her thyroid meds check with the doctors on the med for that

Reply

She stopped taking meds for sjogrens a while ago, that was an anti malaria drug, I don’t tmrem the name right now. It’s the levo she can’t hamdle

Reply

Typical ~ they prescribed hydroxychloroquine but couldn't even TRY her on a bit of T3! I despair! 😥. humanbean, it's sometimes hard for people who are well on Levo to imagine the the pain and torment suffered by those who are not. Thyroid meds are, unfortunately not all the same. Neither are people. xx

Reply

I couldn't agree more :-(

1 like
Reply

Taken from livestrong.com Look up sites on web re vits/mins needed when no thyroid. I think meds need to be taken too - all the best Maje

Vitamin B-12

People without a thyroid gland might have low levels of vitamin B-12. Several research studies conducted in the 1970s and 1980s found that an underactive thyroid potentially impairs the body’s ability to absorb vitamin B-12. A study published in “The Journal of Nutrition” in 1988 looked at rats with hypothyroidism caused by a thyroidectomy or induced by medication. The researchers found that the rats with low or no thyroid function had a reduced ability to absorb vitamin B-12. For adults, the recommended dietary allowance of vitamin B-12 is 2.4 mcg per day. Vitamin B6 is needed as it helps the body to make B12. B12 is best taken as methylcobalamin

Vitamin D and Calcium

Hypocalcemia, or a loss of calcium, occurs in 1 to 2 percent of all patients following a total thyroidectomy. Research published in “Surgery” in 2002 examined the link between calcium and vitamin D3 supplements and the risk of hypocalcemia following thyroid removal. The researchers studied 79 patients following a total thyroidectomy and found that supplementing with calcium and vitamin D3 prevented symptomatic hypocalcemia. The participants received 3 g of oral calcium and 1 mg of vitamin D3 per day.

Vitamin C

Vitamin C might help the body absorb synthetic thyroid hormones after a thyroidectomy. A study presented at the annual meeting of the Endocrine Society in 2008 specifically looked at the common thyroid hormone, levothyroxine. Eleven patients who were taking high levels of levothyroxine and still not reaching their target thyroid stimulating hormone (TSH) levels were studied. The patients took 1 g of vitamin C diluted in water with levothyroxine for six weeks. All patients had lower TSH levels, with the average reduction approximately 69 percent.

Vitamin A

Vitamin A is also necessary for individuals without a full thyroid. People with hypothyroidism have a reduced ability to convert beta-carotene into vitamin A. A vitamin A deficiency could limit the body’s ability to produce thyroid stimulating hormones (TSH) after a partial thyroidectomy. A study published in “Acta Medica Austriaca” found that people with an underactive thyroid, or no thyroid, had significantly higher levels of beta-carotene and lower levels of vitamin A.

Vitamins can be taken at a different time to medicine to ensure no problems there.

1 like
Reply

I don't have anything more to add, really. I just wanted you to know that at least one more person will be praying for your daughter, sending her good thoughts, and bombarding her with long distance healing thoughts, too...

The only thing I might add is that, since you know your daughter, and you've likely had to get through to her on many issues before, what is they best way to get her to understand? My daughter, as an example, is very logical. It takes data, and studies, and graphs, etc., to get through to her. Emotional appeals rarely register. I've known many other persons who were the direct opposite. So use whatever method to appeal to her.

I was thrilled to read the updates that she's willing to attempt the T3, should you be able to procure it or actually get the critical care team or someone to engage and at least get something going there... I hope that she can find something missing and engage to start to feel alive again... Sending all the good thoughts for her care team, for support for you (all this stress can't be good for YOUR condition, either!!), and for her herself... (gentle hugs)

1 like
Reply

Oh, and I didn't see it mentioned here, but I know with the thyroid removal, the parathyroid glands can also be damaged. Has that been checked? The parathyroid glands being damaged (removed, etc.) can cause a host of issues, not limited to, but including heart palpitations and such, too -- as you mentioned she was being tested for heart issues prior to this latest reaction/hospitalization...

Reply

They said at the time her paras were intact as she stayed in hospital for a few days, don’t think they were ever checked again although I’m not sure how they would?

Reply

She won’t buy / do anything without reading hundreds of positive reviews so she really values other people’s opinions, she doesn’t respond to emotional pleas either... luckily everyone here is brilliant so there are many good arguments for t3 👍🏼

2 likes
Reply

Look at every single symptom she has, ESPECIALLY the depression, and Google it along with the words ‘whole plant- based diet’. A year ago, I wanted to die with my Hashimotos and all the symptoms I had had build up over the 15 years since I was diagnosed. I woke up every morning wanting to not be here, but was too apathetic to act on my feelings. I was desperate , and it was my last attempt to find something when medicine wasn’t helping me. I started researching what diet and medication does to the whole body, and I have not looked back. Medications have terrible, toxic side effects on the body, along with the toxins in meat, dairy, processed food and on non- organic produce. Everyday these things are consumed we slowly poison our bodies and they can no longer function as they should, resulting in all the symptoms we go on to develop. Remove the toxins and give the body what it needs and it will recover. Now she has had her thyroid removed, obviously that cannot heal and the thyroid meds will be necessary, but I am positive she can get everything else into remission with the proper fuel she needs and the removal of the daily onslaught of toxins most of us unwittingly expose ourselves too.

I honestly feel like I have been born again, nearly all my symptoms (severe depression and apathy, freezing cold all the time, intense itching, psoriasis, joint pain, leg pain, 12kg overweight, huge hair loss, skin that looked like I was mummified, memory loss, brain fog, etc.etc.) have gone. I have gradually reduced my thyroxine to half the dose and plan on dropping more after next bloods, if my antibody levels continue to drop as they have (they dropped by 75% over the course of 9 months of a gradual diet shift as I learnt what I needed to eat and avoid). I have so much zest for life now, I don’t hurt any more and no longer feel sick. I weigh what I did as a healthy 18 year old, and I didnt restrict calories. I eat unprocessed organic whole plant foods and avoid gluten. My groceries cost no more and my whole family loves the way we now eat and have reaped so many health benefits, from my 68 year old mum, to my 48 year old husband, from my 43 year old brother to my 15 and 17 year old sons.

Your daughter needs to feel there is hope, and that she has some control, and she does, she just needs to know where to look, and sadly it is not with the majority of doctors. Just help her start reading about real food and what it does to your body, and what a lack of it does, and she won’t be able to stop reading. It is so depressing how little doctors know about nutrition and health, they have just a few hours training, and that is it. If they were trained, the majority of medications (and eventually doctors) would be obsolete- but where is the money in that? She has a future, but she needs to take responsibility for her health, not just accept that this is the card she was dealt. Bodies are amazing they can heal so much, but not if they are not given the right fuel (think diesel car with UL petrol).

Start here: nutritionfacts.org/video/fo... (and try to not let her take antidepressants, their side affects will lead to the need for more meds > more side effects > more meds...)

Good luck to you, and her

2 likes
Reply

Thank you, we’ll definitely look into that. She tried paleo a while ago but it was too restrictive so this may work better...

Reply

humanbean ~ lots of good and varied advice re diet and supplements on here, and obviously your daughter will be very depleted and in need of nourishment, but until optimally medicated, I expect not much absorption will actually take place, as you are no doubt aware.

As long as she finds a sensible diet that suits her, and starts on a regime of good supplements ~ knowledgable members will advise when required ~ she will soon recover. Try not to worry about too much all at once. Phase 1 is getting suitable meds and whatever nourishment you can into her, the diet can be sorted later when she is able to participate in decisions more. Are you any further forward with the hospital?

Such a dilemma ~ stay strong, still thinking of you... ((Hugs)) 🌹xx

2 likes
Reply

Thank you TorixBear for your sound advice. It provides some hope to those of us feeling so hopeless at this time.

Reply

Thanks Clarissa, and yes, that is the thing; hope when you are feeling hopeless because you are told you are ‘within range’ on dosage, but you feel so far from ‘within range’. It was so empowering to realise that I, myself, could help myself. I think all my symptoms that disappeared, that are classically associated with thyroid disorder are actually just the symptoms of a sick body, and the development of autoimmune disease is a natural progression of this sickness. Hense so many autoimmune diseases have many similar ‘symptoms’, and hense medication for thyroid is not enough on its own if you continue with the lifestyle that caused the sickness to begin with. The naturopathic doctor I now see says that if the cause of the original autoimmunity is not dealt with, the body becomes even sicker, then develops more autoimmune diseases (MS, diabetes, Crohns, Celiacs, Sjogerns, rheumatoid arthritis etc.) And this forum seems to have a lot of people with multiple autoimmune conditions, myself included (Hashimotos, psoriasis, suspected Celiac).

Everything is crossed for humanbean11’s daughter 🤞🏻🤞🏻

1 like
Reply

Lack of nutrients previously mentioned may be why medication is making her ill; lack of same stops thyroid working properly - Maje

1 like
Reply

humanbean ~ just spotted your edit and I'm so happy for you both!✨ what wonderful news! 🎉 onwards and upwards now.... 💕xXx.

2 likes
Reply

Hello humanbean1.... I’m very sorry to hear what your daughter is going through. I my self am a hypothyroid suffer. I too em some what self medicated. I am just starting to tell my doctors what tests I want done and what drugs I want to try. I have had the disease for 17yr now, though. I have a suggestion... I use YL oils to help supplement my thyroid I still take my synthroid. I have been walking around for a year with cold like symptoms and all the other discomfort that come with your thyroid malfunctioning. Myrrh, spruce, lemongrass, peppermint, spearmint are some of the oils you can use to help promote proper thyroid function. I have ups and down. more ups then down, though. I hope you find this a help. I hope your daughter feels better. It does get better. Keep working at it. it does get better.

1 like
Reply

I'm so sorry to hear what an horrendous time your daughter and you have been having. I can't add any more advice but wanted you to know that I'm thinking of you both. I was very glad to read the edit too. Please don't feel you have to reply; you must be exhausted. Sending love and thoughts xx

2 likes
Reply

I'm moving home tomorrow but have just picked up on your daughter's plight. I was very under medicated in mid 1990s and ended up begging to be taken into a psychiatric unit. The consultant psychiatrist was totally useless, chucked high dose anti depressants at me, I left after one week. I now know looking at my medical records for that time, that I was drastically under medicated. Members here have mentioned that psychiatrists are able to prescribe T3 but they do not. Their brains do not work logically or out of their box.

Your daughter needs you to ask for advice here and to prove to her somehow that it's only you who can help her. Believe me, the doctors - even professors with all their vast salaries - will fail to help her.... that's my own belief anyway having gone through various stages of myxodema madness over the decades.

I personally would say you really do need to get your hands on some T3 or NDT. A higher dose of T3 (plus all the B vitamins in high doses) has got me to a much better place. I was previously on 20, 25, 30 mcg of T3 a day. It was definitely not enough. I'm now on 40mcg a day all taken in one go 1st thing in the morning. I'm only 5ft.Zero, weight 7.5 stone but I need 40mcg a day. Wishing you luck and big hugs, stay strong for your daughter. x x

1 like
Reply

Me again, does your daughter explain why she refuses to take medication, i.e. thyroid hormone?

Perhaps, I missed that..

Reply

Hi glad to see your edit and fingers crossed for you both hugs x

Reply

I can relate to her because u do get sick and tired of being sick and tire and wanna give up. I have been sick with hyperthyroid and graves disease for 22 years. Its fun to be sick and people who r not sick dont get it.

Reply

hope she is better, how is ur daughter doing now? my thyroid was removed 47 yrs ago after being born but Ive been sick most my life & getting worse..

Reply

You may also like...