Please help, I'm desperate

[HC17]

I am desperate for some help with a newly (12 months ago) under active thyroid: passed around, hair still falling out, exhausted, not get anywhere with doctors as I don't know what I dont know. Daft question I'm sure, but is there anywhere I can go, I don't care of the cost, to get some help? Sorry for the dramatic email, but off work again after not long returning,was off for 12 months, back to sleeping 16 hours a day can't see properly or stay awake. Please, please help, I'm desperate

[DippyDame]

Sorry you feel so unwell....you are not alone here. Many of us have found ourselves in a similar position.....wrongly (or not) diagnosed and/or medicated by medics who lack knowledge of thyroid disease. Sad but true.

Do you have any thyroid test results - including ranges - that you can post on the forum, these will help members advise. You are legally entitled to ask your surgery for copies.

Many of us have private tests done these provide more information than those carried out by the NHS.

This link provides the info.

thyroiduk.org.uk/tuk/testin...

Basically you need to test TSH, FT4, FT3, folate, ferritin, vit D and vit B12 and antibodies.

As soon as members have test results you will be offered advice which, I can vouch for, will point the way forward.

Over 100,000 people have arrived here, just like you and I, desperately looking for answers which medics have been unable to provide.

So, one step at a time, the first one being those results, it may seem a lot to take in ...but a vital step towards better health

Take care

DD

[TSH110]

Oh dear so sorry to hear you are feeling so unwell. If you email thyroid UK admin they can send a list of sympathetic medical practitioners and you could go and see one of them.

It can take a long time to get optimised on medication but it sounds like your doctor is clueless.

Ask at surgery reception fur copies of all your blood tests for your own records (it is your legal right in the UK) and post a photo (get rid of any personal info drs name etc before posting any shot of medical records) and people will comment. It is important that ranges ( values in brackets) are included.

Try going gluten free as this may help. Take your meds well away from food coffee etc ether 1st thing in morning or last thing at night.

Hope this helps.

You really need some decent support you should not feel this poorly if properly medicated - TSH c.0.2-0.5 and free T3 and free T4 in the upper third of the range - which I bet you are nowhere even remotely near.

[Hidden in reply to TSH110]

Hello I am always looking at doctors! Can you tell me how to find the email for the admin person to get the list? Thank you so much!

[TSH110 in reply to Hidden]

This is the email from the thyroid UK web site :

For the list of Private Doctors and Practitioners,

please email Dionne: [e-mail]

[Hidden in reply to TSH110]

Thank you so much!!

[SilverAvocado in reply to Hidden]

Don't be too optimistic about doctors on the list. Even though these are doctors some members have had a good experience, doctors as a whole are so bad that these will often let you down, too.

I've seen three private doctors from the list, two were pretty bad experiences, although one of the took me one step forward. The third was kind of okay but still didn't get me very far and was a confusing experience.

Seeing private doctors is still a bit of a roll of the dice

[Hidden in reply to SilverAvocado]

Thank you for the heads up! I've been through a dozen doctors in the last 2 years and I think I just found the one who is really going to help. Just always like to look at it other options and compare names on the list as well! The reason I've spent two years so unwell is because a couple doctors made bad mistakes I am appalled at how poorly thyroid patients are treated!

[MissGrace]

Hi HC17, sorry you’re so unwell. A common thread on here for hypos is under-treatment. What area are you in and how far are willing to travel? The info can help people to recommend someone in your area by private message. 🤸🏿‍♀️🥛

[msmono]

Hi, I totally empathise, especially with being off work which was a new pressure for me when I got sick. So sorry you feel so bad but it can/will get better! It sounds though you've had some diagnosis and treatment already so I assume there were some blood test results you could share? But, as others have said if you want to have an endocrinologist suggestion you need to give us a rough idea of where you could travel to, to see one. I.e. if in the UK -south east/north west. I can only recommend South/South East if that's any help? We don't put names of medical professionals on here so any recommendations would be direct messaged to you. You can also email admin on here to ask for a list of NHS (if in the UK) and private endocrinologists so you can choose one who's open to listening to and treating you.

[cazlooks]

hi sorry to hear you are like this, we've had the exact same problem in our family as we don't convert our t4 to t3, and GP's don't test for t3 so the NHS wouldn't give us the medication for it. The solution to this is to go private, get tested properly (ask for the tests to be done at the local hospital if you can't afford them to be done privately - some consultants have affiliations with the NHS, pm me for info about one in Gatwick Spire if you can't find one local). Once your private consultant advises the GP what you need the GP is obliged to give you a NHS prescription for it. However I strongly recommend that you find a GP that understands how the main gland in your body works.... it may be one in the surgery that you already attend or it may be you have to change surgeries. Alternatively you can just buy your meds - again pm me for details as we can't name them here. This is what we did initially.

[cazlooks in reply to cazlooks]

PS. If you do decide to buy your meds invest in one of those watches which takes your bp etc. this info stream will help you not to overdose...

[Chippysue in reply to cazlooks]

Please don’t recommend these watches without researching them thoroughly

[cazlooks in reply to Chippysue]

we've got more pro, but there's better ones on the market atm

[magsyh in reply to cazlooks]

I'm not so sure if they are obliged to give you a prescription. I got a private diagnosis and NHS won't look at me. I have to buy my own levothyroxine because my doc refused me on the grounds that they don't agree with private diagnosis coz my TSH not high enough! X

[cazlooks in reply to magsyh]

change your consultant to a one that works NHS and private?? and change your GP

[magsyh in reply to cazlooks]

I have seen so many GPs in Scotland here near impossible. I had a small procedure done under GA and even then they said you're not hypothyroid. I said no because I'm taking thyroxine only the anesthesit was interested enough to ask.

[Angel_of_the_North in reply to cazlooks]

NHS isn't obliged to do what a private consultant says, only an NHS one.

[cazlooks in reply to Angel_of_the_North]

change your consultant to a one that works NHS and private?? and change your GP

[Angel_of_the_North in reply to cazlooks]

Only works if you see consultant as part of NHS (and most NHS consultants do private work anyway). GP makes no difference as they are no allowed to prescribe T3. Getting a private prescription and getting it dispensed in Germany works as the moment but will not work when we leave the EU, and paying for T3 privately in the UK is too expensive for anyone without a 6 figure salary. The whole point is to get your prescription on the NHS, like your levo prescription - otherwise you might just as well buy your own online and not bother with GP or endo

[SilverAvocado in reply to cazlooks]

We have many cases on the forum of patients going entirely NHS and their GP still not following Endos instructions. Some patients in this situation are able to continue get hospital prescriptions through the Endo, and others are stuck not being able to get their medication.

It's not at all a simple picture, and almost impossible to get T3 on the NHS at the moment

[Lora7again]

It sounds like you are undermedicated ... what dose are you on?

I have never returned to work since I became ill and now work for myself at home.

[Marz]

Hope you are well enough today to respond with more information - so we can help you 💐

[mel35]

Sorry to hear your so unwell, I had similar problems with doctors but there are some really knowledgeable people on this forum that will help you, I got a test kit from blue horizon who did all the thyroid tests that the gp don’t do, they also send you a report which I printed out and gave a copy to my drs and surprisingly they took the advice and followed their suggestions, it’s not a quick fix but it’s a good place to start, following the testing I got my thyroid meds increased, started vit d b12 jabs and iron tablets all which helped to feel more like my old self. Good luck x

[ravensgeo]

all the advise below is excellent and in case anyone has not mentioned it iight add a 24hour saliva cortisol test.I get mine from blue horizon. Can really effect efficacy of meds. I am on 4 grams of naturthroid a day but recently hair loss and tiredness isback.. i find my cortisol is very high. So if you dont get settled its worth doing.I use blue horizons as nhs dont do it

[SilverAvocado in reply to ravensgeo]

Ravensgeo, unfortunately the 24hr saliva test from Blue Horizons (and Medichecks the same) are not fit for purpose. Their ranges make it impossible to detect low cortisol, and also don't include DHEA which is essential for interpretation.

The ThyroidUK website explains how to get one from Regenerus or Genovo, which are much better tests at a similar price.

Personally I would advise starting with thyroid and vitamin testing, and then look into saliva cortisol once someone has got stuck into treating those two things.

[HashiFedUp]

I feel your pain. My Hashimoto’s came on with a vengeance after I had my son. Looking after a baby when you have symptoms from Hashimoto’s or similar is heartbreaking. I soooo understand and sympathise. Trick is... get yourself a supportive GP. If you current one rubbish move on. And go private if needs be. See a private endo. If you feel supported then that’s half the tonic you need.

Private endo’s (good ones) are worth every penny simply because the NhS don’t have the resources or the speed to treat you effectively and in good time. That is the reality im afraid. NHS is amazing for critical care but anything like this, it’s under resourced.

My private endo is in Somerset / Bristol. I can pm you details if you’re in the these areas. Anyone else can do the same on the forum so state your rough location.

Make sure you ask for help with the baby. Friends family whoever. Rest on the bad days. Go easy on better days. It will improve over but you’ll need to be patient. And patient again!

Don’t over commit. I work a zero hours contract so I work when I’m well. Preschool for your baby so you can rest?

These are all things I did to cope. Some days I was just on the sofa all day and my poor son had to watch films all day! Not great but we had to some days to survive. And he’s fine now aged 5 doing well.

Private message me if you feel down sometimes. X

[Tilly169]

Hi there. I totally sympathise with you. I had left lobe removed as it had a growth in it. Not given any medication as the right thyroid lobe coping. However I had been off work with ME so didn't notice that the right lobe had given up and put the tiredness down to ME. Put on loads of weight before diagnosed and given medication. I continued to sleep, like you, 16+ hours a day and many blood tests constantly showed my thyroxin levels were within the range. Up late, sleeping in the afternoon and constantly tired a new dr at my practice sent me to the sleep clinic and tests showed that I was having 50 episodes PER HOUR of low oxygen due to the back of my throat closing. My brain was aware of this and woke me up so the throat opened I then went back to sleep and the same thing happened as I said 50 times per hour. I was diagnosed with very severe obstructive sleep apnoea (30 episodes is severe). I now have a CPAP pressure mask to wear at night and after more than 10 years can manage on 7-8 hours of sleep and it has changed my life – never nod off in the afternoon now. Being overweight can exacerbate narrowing of breathing area at the back of the throat as soft tissue relaxes when you sleep. However the specialist said that anyone can have sleep apnoea as he had very thin people and children in his clinic. It may be worth you asking for this test you have absolutely nothing to lose if the test comes back negative but loads to gain if you have this problem and it can be solved. Having sleep apnoea can cause heart problems and I now have slight heart failure which I think if from years of oxygen deprivation at night. Apparently 1 in ten people can have sleep apnoea - please check yourself out it could change your life. You could be blaming the doses of medication and it could be something else. Good Luck - Tilly x

[JD138]

Like you I tried just about everything. Best result for me was a well qualified nutritionist. She changed my life. I had to give up gluten and dairy. Sounds rather simple and it did take time and patience and testing my gut. Please try it. It worked for me. Good luck.

[mfinn]

Hi HC17. The doctors are not treating you properly to leave you feeling so ill, a common theme on this forum. All the administrators on here are more knowledgeable about hypothyroidism than most doctors so I’m hoping one of those such as SlowDragon , or greygoose , who isn’t an administrator but knows everything because of personal experience, will see your post and help you. They will ask you to post your blood results to see what’s wrong. With their help you can get better by using the NHS and won’t have to go private because that doesn’t guarantee any better treatment. No point worrying about work right now, you’re ill, concentrate on getting better.

[greygoose in reply to mfinn]

Not much I can say that others haven't already said. We need more information to be able to help.

First step: ask at your GP's reception for a print-out of your blood test results for as far back as possible.

Second step: post them on here, with the ranges.

Third step: give us any other relevant information, such as: how much levo are you taking? When did you have your last blood test? What are your symptoms - apart from hair loss?

Then, we can get down to some practical trouble-shooting.

[mfinn in reply to greygoose]

Thanks for answering greygoose , I recognise everything HC17 is experiencing but I haven’t got the know-how that you and some others on TUK have. Hopefully HC17 will look in again and see your reply.

[jillyana]

Make sure your ferritin levels are OK. My hair fell out in clumps due to low levels caused by hypothyroidism.

[Lora7again in reply to jillyana]

Ferritin needs to be over 80 for hair growth.

[DippyDame]

You can edit your reply by clicking on the grey "more" button at the bottom of the post

The drop down box has an edit option....click on that.

Edit your post

To finish click on the blue "Edit response" box

[cazlooks]

why?

[Chippysue in reply to cazlooks]

If you do some research you will see that they are harmful

[SlowDragon Administrator]

As everyone has said already....please write a new post giving recent blood test results and say what dose of levothyroxine you are currently taking

Also helpful to know results from before starting on levothyroxine.....if TSH was extremely high, vitamin levels very low etc

Far too frequently people are left on ridiculously small dose of levothyroxine

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

Extremely important to test thyroid antibodies

[HC17]

Hi everyone, my sincere apologies foe the delayed response. By the time I was able to reply,I was locked out due to my delay. Slow Dragon however has been providing mountains of support via PM whilst waiting for my account to be unlocked.

The last week has been extremely emotional for me, due to the messages flooding in from you all. Foe the first time in nearly 2 years, I have hope, and believe that my Thyroid problem will get better, and that my poor state of health, and life that has been existing, not living, might come back. Your stories, whilst sad and frustrating foe what you have suffered, and many still do, there are so many successes. I reached out to you as a stranger, and it feels like you have ran to my aid to help me, you have no idea what you have done to me, and how me,my partner and my family and celebrating the positives, because of all of you.

I am booking posted my bloods online to Slow Dragon, and will try and post on this main forum too. Based on my results, my other medication, and not told by my GP what I should and should not do prior, my results are null and void it seems. Getting new ones done this week, after following advice from you good people. In the meantime, I need to thank you all, for coming to my aid. The morning after I posted my mesaages, I was speechless and felt like a lottery winner what I found from you all. You are wonderful people helping me in my desperate need, and I can never thank you enough for what you have done for me so far, you have no idea. I will be back soon with my results, and will keep reading all these messages. I apologise foe my delay, but my speed is very slow and delayed at present. You are all amazing people.