Feel neglected by endo - advice appreciated - d... - Thyroid UK

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Feel neglected by endo - advice appreciated - do I go down the antidepressant route?

Hollie2345
Hollie2345

I'm new here, hello, I was diagnosed hypothyroid in 2011 but going by how I felt before diagnosis I think I may have had hypothyroidism in 2003 after being progressively tired for no reason.

I feel pretty neglected by the endo I see, I have ongoing symptoms and I had a drop in Levothyroxine dose from 175mcg to 100mcg back in April.

So I called the endo secretary on Thursday and told her I would like to know what my dose should be due to ongoing symptoms. She said she will let my endo know I called and that he will make a decision on what my dose should be. He has not contacted me since I called the clinic on Thursday and I am due a medication review next week which needs to be done as I have been getting very high blood pressure and also low blood calcium even though I take in a lot of calcium per day.

I am now seeking a second opinion from another endo since my one has not gotten back to me. He was also responsible for removing my T3 back in August 2017 despite a previous endo saying I would benefit from it due to poor conversion of T4 to T3 and that it would help me feel better, which it did.

When I spoke to my current endo for the first time he immediately took me off it, saying I was thryotoxic, the T3 is not good for me and he is anti T3, anti NDT and anti Armour anyway. Since having the T3 taken away my thyroid levels have not held steady at all.

With all this not knowing what is happening with my treatment it is making me increasingly depressed, anxious and tense.

My symptoms are really affecting my home and work life. If anyone could please advise I would be grateful. And any tips/suggestions about what to say at my appointment would be much appreciated as I go into all medical appointments on my own due to my husband and family not being very understanding about my illness and how it affects me. I am 30, I feel like I should do more with my life and not have to constantly go back and forth to GPs with ongoing symptoms.

Thank you.

! THYROID FUNCTION TESTS – GP – COMMENTS – SATISFACTORY – NO ACTION

(Warning – if planning pregnancy – discuss)

! Serum TSH level 4.25 mIU/L (0.27 – 4.20)

Serum Free T4 level 16.8 pmol/L (12.0 – 22.0)

Serum Free T3 level 3.3 pmol/L (3.1 – 6.8)

37 Replies
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I feel pretty neglected by the endo I see, I have ongoing symptoms and I had a drop in Levothyroxine dose from 175mcg to 100mcg back in April.

I'm not surprised you feel neglected. Changes in Levo dose should never be in amounts greater than 25mcg. Then wait 6 weeks, do a re-test, then adjust again if necessary.

When I spoke to my current endo for the first time he immediately took me off it, saying I was thryotoxic, the T3 is not good for me and he is anti T3, anti NDT and anti Armour anyway. Since having the T3 taken away my thyroid levels have not held steady at all.

I'll add to your description - your endo is also anti-patient, cruel, sadistic and useless. I would have refused to see him as soon as he said all that.

And any tips/suggestions about what to say at my appointment would be much appreciated as I go into all medical appointments on my own due to my husband and family not being very understanding about my illness and how it affects me.

If your family and husband are not understanding and refuse to learn then you could ask a friend or relative to join you when you see a doctor about anything, but only if you trusted them not to sabotage you.

I don't know if you are aware that you have other options. You could ask for a referral to an endo privately. You would need to ask for advice on finding one who might help. There is no point in paying to see another sadist. I've never seen an endo, private or NHS. I would have to be dragged kicking and screaming to see one, to be honest. Another option is to pay for your own blood tests done privately (you don't need to see or pay for a doctor at all). And you can buy various forms of thyroid medication online.

Regarding anti-depressants... People with dodgy thyroids are often depressed when they are wrongly treated and/or under-treated. People with hypothyroidism are also frequently deficient in nutrients which adds to the depression. The best course of action is to treat the thyroid sufficiently and correctly and supplement to get your nutrient levels optimised, and then your depression may disappear on its own.

Another issue for hypos is that we often have very poor gut health because we end up with low stomach acid. Fixing the gut helps enormously in terms of feeling well and improving nutrient absorption from food (and supplements).

Thank you. I am thinking about seeing Dr P.

! Serum TSH level 4.25 mIU/L (0.27 – 4.20)

Serum Free T4 level 16.8 pmol/L (12.0 – 22.0)

Serum Free T3 level 3.3 pmol/L (3.1 – 6.8)

Your TSH is over the range. If you were being treated adequately it would be much lower. Most hypos feel best when TSH is 1 or below.

Your Free T4 is under mid-range. For many of us this needs to be well into the upper half of the range to feel well.

Your Free T3 is almost rock bottom. For many of us this needs to be well into the upper half of the range as well.

There are exceptions to everything - but your results just scream under-medication. You need more Levo as a first step. I suspect that you would need another 50mcg Levo minimum. But increases should only be done 25mcg at a time, with re-tests done every 6 weeks or so.

I would suggest you read replies by SeasideSusie :

healthunlocked.com/user/sea...

and SlowDragon :

healthunlocked.com/user/Slo...

They both write very informative posts on the subject of thyroid and nutrients and testing.

Thank you, I am still waiting on bloods done 2 July for thyroid.

shaws
shawsAdministrator

If you want a second opinion email Dionne at Thyroiduk.org.uk who has a list of sympathetiic doctors:-

tukadmin@thyroiduk.org

and hopefully one is near you.

Most on this forum are on here because we have been failed by the medical profession and now realise they are very, very poorly trained and do not take account of any clinical symptoms which all doctors used to know in the past before blood tests were introduced - not supposed to be a replacement for their knowledge but that is what happened, they know nothing about symptoms nor how to relieve them.

thyroiduk.org.uk/tuk/about_...

These doctors are completely unaware that they can cause us to become more unwell and may develop other problems due to their inefficiency and ignorance about how to treat.

The following of your tests:-

! THYROID FUNCTION TESTS – GP – COMMENTS – SATISFACTORY – NO ACTION

(Warning – if planning pregnancy – discuss)

! Serum TSH level 4.25 mIU/L (0.27 – 4.20)

Serum Free T4 level 16.8 pmol/L (12.0 – 22.0)

Serum Free T3 level 3.3 pmol/L (3.1 – 6.8)

is for people who aren't yet diagnosed as we will not be diagnosed until TSH is 10 but once diagnosed our TSH should be 1 or below with Free T4 and Free T3 in the upper part of the range.

Amazing, isn't it they do not know even the basics.

You should have a TSH of 1 or lower, FT4 and FT3 nearer the upper part of the ranges instead of bottom. No wonder you are unwell and yours is not an unusual post.

All blood tests for thyroid hormones have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and test and take afterwards. This helps keep the TSH at its highest as that and T4 is all they take notice of, so we have to educate ourselves to prevent us developing other more serious conditions.

thyroiduk.org.uk/tuk/about_...

We all agree with humanbean as 'we've been there - done that' but recovered on our own with the help of members.

We also have to have B12, Vit D, iron, ferritin and folate tested as everything has to be optimal.

The NHS has withdrawn the Active hormone T3 which could be added to T4. T4 (levothyroxine is an inactive hormone). T3 is the only Active thyroid hormone and T4 is supposed to convert to sufficient but doesn't always. Researchers (several) have proven that T4/T3 combination works best for many people.

Some are sourcing their own T3 but no information is posted on the forum and a private message will have to be requested as it isn't permitted on the forum. Look after your own health rather than develop other problems.

Our Endocrinologists and doctors are ignorant these days since the blood tests and levo were introduced. Before that we were all diagnosed upon clinical symptoms and given NDT (natural dessicated thyroid hormones - the very original which has saved lives since 1892).

Hollie2345
Hollie2345
in reply to shaws

Thank you, I have results of vitamins and minerals

shaws
shawsAdministrator
in reply to Hollie2345

Put them on a fresh post as more will see a new post. Also make sure ranges are stated.

shaws
shawsAdministrator
in reply to Hollie2345

A low Free T3 can also cause depression because the brain and heart need the most T3. There are millions of T3 receptor cells in our body and they all need sufficient T3 (supposed to convert from t4 into T3 but we cannot always do so effectively).

restartmed.com/t3-thyroid-h...

ncbi.nlm.nih.gov/pmc/articl...

Hi Hollie.

Firstly welcome to the forum, Stick with us & you'll get the advice & support you'll need.

I'm sorry to hear you are feeling so utterly fed up, us members have been there believe me. This forum has been a total game changer for me. You will get there.

Your body will be feeling fed up as your twit of an Endo has dropped your Levo & taken T3 off you (GRRRR!)

Levo needs to be increased until symptoms have gone.

Can you get an appt to see the good Endo that gave you T3. Ditch the bad Endo he's a complete baffoon, I could use other adjectives but I would be thrown off the forum 😁

He states he's anti T3 and that it doesn't help you, well he's completely wrong & its because he has absolutely no knowledge of how it works, he'll have not been educated in Thyroid in the way one needs to be.

You know Levo & T3 works, the good Endo knows that too. That's what matters.

Many people on the forum are forced to source their own T3, be prepared for that.

If I'm honest & I think others will agree, I don't think anti-depressants are the answer.

I'm no medical expert but looking at your free's (FT3 & FT4) might there be a conversion problem? Is FT4 high enough? Can I ask why you are taking calcium? I'm afraid I can't comment on the high blood pressure, other than it can be stress related. Someone will come along & set you straight.

Your TSH is over range, which confirms you are hypo. You need to be as close to zero as possible & thats what Levo is for. Increases in Levo are required to get you to that level & be symptom free.

With regards your next appt do you have a male friend to accompany you? The aim of your appt is getting Levo increased and by 25mcg every 6-8 weeks, as this is how long it takes for the Levo to do it's work.

Honestly some male Dr's retain a 'Dark Age's' approach when dealing with women!

Have you got results for TGA & TG antibodies? This test will tell you if you have Hashimotos, as at least 80-90% of hypo sufferers will have this condition, a gluten free diet can help reduce antibodies. Have you been tested for Vit B12, Vit D, folate & ferritin? Getting vitamin deficiencies sorted will help thyroid treatment work.

You will get other replies too so hold tight & all the very best to you 😊

I've got to do the school run now but will get back to you with with informative links.

Hollie2345
Hollie2345
in reply to Paula101

Thank you, I do not take calcium but it is usually mid-range when tested. But not anymore. I can no longer see the good endo because she left the hospital.

I also have TPO and TG antibodies as TG antibodies 385 (<115) and TPO antibodies 171 (<34)

Yes I have a conversion problem as when I was on 175mcg Levo my TSH was 1.20 (0.2 - 4.2) FT4 19.2 (12 - 22) FT3 4.1 (3.1 - 6.8)

I have results for vitamins too, feel lost about what to do about them.

Paula101
Paula101
in reply to Hollie2345

Your welcome. If your'e thinking if seeing Dr P, I can vouch for him. Seen him myself & he's very caring & knows his stuff. He got me started on my thyroid journey and now I'm on NDT, so here's hoping. If you post your Vit & min results on a new post, we can take a look. You've had great advice from the other members & we're always here to help 😊

Hidden
Hidden

Hi Hollie2345 So much good advice to your thread. Can't add any more knowledge except to say Please, please, don't consider the antidepressant route for relief of your mental thyroid symptoms until you have had a complete thyroid evaluation and workup as defined on this post and then found a doctor who is willing to treat you correctly. Often a hard task. The anxiety, depression, brain fog, memory problems, hopelessness, relationship problems etc are miserable, I know. I've been there big time and they are slowly beginning to resolve now with proper thyroid treatment after years of feeling bad from ineffective treatment. I spent years taking Prozac with no help and many side effects. Also browse around this site and read the many stories from people who were sent down the antidepressant treatment path by doctors including endocrinologists who should know better who provided a 'quick fix' for an illness they knew little about (hypothyroidism.) In my opinion this quick fix is like having my gallbladder removed when my appendix is the problem. Move slowly making this decision. The most important thing that I learned about thyroid treatment is it is a slow process because our bodies cannot be bombarded with meds and dosages too quickly. So be prepared to feel bad a little longer but know there is a light at the end of the tunnel. It is scary and sad how common your scenario is to those of us with thyroid problems. Take care. irina

Hollie2345
Hollie2345
in reply to Hidden

Thank you Irina, this endo I am seeing really thinks I have general anxiety disorder. It's written on clinic letters. I was on prozac myself before when I lost my job. It left me feeling very mentally numb. :(

shaws
shawsAdministrator
in reply to Hollie2345

Some people have awful effects on Prozac. Once we have anxiety or other such 'names' they automatically assume we have a mental health issue. With Hypo a low T3 can also cause mental health symptoms because our brain and heart need the most T3 and so does the millions of T3 receptors in our body. T4 is inactive it has to convert to T3 but we may not have sufficient to convert effectively or dose may be too low.

restartmed.com/t3-thyroid-h...

Hidden
Hidden
in reply to Hollie2345

I've had documented general anxiety disorder for years and I have Xanax prn ordered (I'm 74). But treatment of GAD (gen anxiety disorder )is not going to be fixed by psychiatric drugs when the cause is most likely thyroid. I will always be anxious and that's okay. But I'm more able to cope with increasingly optimal thyroid meds. In my opinion, psychiatric drugs sometimes help the prescribing doctor more than the patient. They calm us down, lessen our complaints, and generally get us off our doctor's back. And you're right. They can numb us up so we don't feel anything-good or bad. Not my life's goal!

shaws
shawsAdministrator
in reply to Hollie2345

When our symptoms are due to lack of hormones, they should not prescribe other than thyroid hormones, i.e. prozac etc. Anti-d's are not thyroid hormone replacements.

When are thyroid function results due back please? i have been waiting for my new ones since Monday 2 July.

Thyroid function tests shouldn't take longer than a week, in my experience.

Thank you, so if I haven't heard back I can only guess the results are normal. Though the GP has not acted on underactive results or contacted me about them as I am under an endo and he has been adjusting my dose.

You’re undertreated, so have high blood pressure and feel depressed. You need to increase your dose until you feel better, a bit at a time. Then tackle the endo. Get your prescription increased. Good luck

Hollie2345
Hollie2345
in reply to Aurealis

Thank you, my thyroid function was retested on Monday 2 July. I have not heard back so I presume they are normal and no increase is needed. I have been trying to contact my endo regarding this since it takes so long to get a GP appointment and the endo usually gets back to me fairly quickly but not this time.

Your shouldn't make that assumption. Ask for a copy of the results and the reference ranges and don't give up until you get a copy.

Hidden
Hidden
in reply to Hollie2345

And share your feelings here when you need to vent. We've been there and some of us still are.

Hollie2345
Hollie2345
in reply to Hidden

Thank you Irina, I have heard nothing still from the endo regarding about what he plans to do so I am going to collect my thyroid results today (I couldn't yesterday because it meant me having to walk up a hilly road to the GP and I wasn't feeling up to going up it) I am now starting to get terrible side effects from the Levo I take and I am going to ask the GP at my appointment next week if I can be changed back to my original brands. My results were still poor which the endo knew but that's where the new referral will come in!

Hi Hollie,

I can fully empathise with you, as my GP and Endo have tried to reduce my Levothyroxine from 150mcg to 125mcgs, since 2013. I have told them I will not reduce the dose because I feel horribly ill and unwell on 125mcg. I have just seen another GP and she says they will discuss my problem and hopefully come-up with a solution!

I wouldn't worry too much about your husband and family not understanding this ailment because our Doctors and Endochrinoligists don't fully understand it either! I talk to my wife about the symptoms nearly every day but she cannot understand just how horrible these feelings are. Just try and keep them onside and best of luck.

shaws
shawsAdministrator

These links might be informative:-

hormonerestoration.com/

hormonerestoration.com/Docs...

I think the Do It Ourselves care is best as none of the professionals seem to know anything but the TSH and T4 and they definitely don't treat symptoms as used to be done before the introduction of blood tests along with levothyroxine.

thyroiduk.org.uk/tuk/about_...

Hidden
Hidden

Don't presume, Hollie. Track them down and demand printed copies with normal ranges included. If a nurse tells you they are normal/fine/ within normal range or uses a similar meaningless comment, don't accept that. You need and are entitled by law to complete printed copies with ranges. Post ranges here as so many labs have their own ranges. And, I understand, they are, by law, free to you. You may have to be more assertive than the office. The squeaky wheel gets the grease.

Hollie2345
Hollie2345
in reply to Hidden

Thank you, I will do this. And looking at it this way, I will be better prepared for my appointment next week and for when the endo calls me (if he does!)

Hidden
Hidden
in reply to Hollie2345

👍

Hi and welcome to this amazing Forum. I have regained full health after 36 years with the info and help from here. All I will say is that just about every endo is a waste of space. That's the reason we are all here. I've seen about 8 endos through the decades, and looking back & also reading what they wrote (I paid for copies of all my medical records), they lied, they were unable to interpret my thyroid blood tests, and they carried out the most basic or wrong ones.

I haven't even read your profile or any of the replies here. You will get many helpful, wise & well informed replies. You are better off taking your own health into your own hands. I'm sorry if this sounds cynical and harsh, but that's how it is with thyroid illness.

Thanks

I think I may have to take my health into my own hands, I just don't know what to say to my endo when he calls me this week - if he ever calls me at all.

Many of us here have had your experience. I personally wasted many years trusting endos and waiting for them to heal me. They never did - not even Professors, who I personally would have thought they should be capable of doing that. In the end, I did my own research, mainly here & reading the links; then printed many of them out, and shoved them in front of my GP !! Good luck, and keep learning.

Thank you marigold. I still ahve heard nothing from the endo even though he tends to call me on Wednesdays. I left a message with his secretary on Thursday. I am now feeling really ill since switching to the lactose-free brand and when I see my GP next week I plan to ask to be put back onto what I was taking originally and a referral to a new endo or see Dr P.

Hidden
Hidden
in reply to Hollie2345

Hi Hollie. These are my words and you will have your own style of expression. But for me, I have developed a short conversation I have with doctors when I don't feel they understand my goals or are not willing to work with me re finding the best treatment for me. Be polite, friendly, non-confrontative, but firm. " My treatment goal for myself is to feel as well as possible with this (specify) condition. I respect your knowledge and would like to continue treatment with you. But I must have my input respected and if we can work together to achieve this- good. If not I will have to take my health into my own hands and move on. When we have differences of opinions about effective treatment, I am happy to bring in information to support my requests and I want to feel my input has value and will be fairly considered." Explain in your own way and start collecting/printing info (books, this site, whatever that you want him to read and discuss. You are the driver of your health and the doctor's job is to allow you to take part in treatment choices. It's often more effective to tell them what your expectations are instead of asking their permission to receive effective care. Sorry for the sermon but sometimes we have a skirmish on our hands when our health goals are at odds with our doctor. Take care. irina

You endo is useless. Your results show that you are undermedicated and need T3. A drop of 75mcg was far too much in one go. Can you just go back to GP? Or buy your T3 and ignore them all.

Thank you, I plan to go to my GP on Tuesday and say I wish to be monitored on T3 and Levo combi therapy. The endo has still not gotten back to me, it will be a week tomorrow since I left that message.

I think they follow your lead, however reluctantly, but if you’re hoping for permission you’ll be disappointed. Don’t chase them, chase your health. Good luck.

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