Help needed please.

[Angel54]

Hi Everyone, At the time i was diagnosed two years ago as being hypothyroid i felt like i was half dead, and had been getting worse over the previous year. I was started on 25mcg and over a few months was taking 100mcg levothyroxine. Gp at my surgery had told me i was then back in normal range at the beginning of last year. i found out by phoning surgery my tsh was 2.58. At that time. i was told i was on enough medication. I still have lots of hypo symptoms, terrible joint pain, feet legs hips back shoulder hands fingers. brain fog, i forget everything immediately, half my hair has fallen out its so seethrough now. eyebrows disappeared. I was told that the pains were wear and tear, as ESR was elevated. My cholesterol had risen to 8.2 also.Also B12 low, i take that myself now as i dont know how low it is. I decided recently to see a private GP. as i felt terrible. My new blood tests of two weeks ago reveal that my tsh is now 51.2 my ft4 is 7.4 and my free t3 is 2.2 Im going back to my nhs GP next week and hopefully he will up my levothyroxine. The private GP i saw thinks i need to take 150mcg levothyroxine, and has written a letter for me so i will see what happens. Any ideas how long it can take for symptoms to improve, as ive felt like this for nearly 3 years now? Does anyone think that i need to ask to see an endocrinologist? Any advice would be much appreciated. I think this is a brilliant website.

[helvella Administrator Thyroid UK]

Angel,

I concur with the private GP.

As has been stated many times here, treated hypos often need to have their TSH as the bottom of the reference range, and their free T4 near the top, or even slightly over. A TSH of 2.58 whilst on thyroxine is hgh (it is arguable for diagnosis). It has been mentioned in other answers that in Sweden they are likely to take action at 2.5.

Mind I am surprised at quite how high your TSH and low your free T4. I feel I have to ask if you are taking your thyroxine first thing in the morning, well before any food? Are you taking any other medications? Are your thyroxine tablets in date? It does look like something could be affecting your absorption.

Pleased to see that you are aware of your B12 level - how are you supplementing? Also pleased that you appear aware that low thyroid hormone levels can result in high cholesterol levels.

Have you ever had a thyroid antibodies test (anti-thyroid peroxidase or anti-thyroglobulin)?

The time it takes to resolve varies widely. Some people notice changes within days, others can take weeks. But it looks as though at the monent you are still going in the wrong direction.

An endocrinologist might be in order but the majority apepar not to be very good at handling hypothyroid sufferers.

All the best

Rod

[Angel54]

Hi Rod,

Thanks for your answer, not sure if im typing this in the right place, as for other medication, the B12 im getting from justvits and taking it sublingually. other medications, yes ive been put on blood pressure tablets at a very low dose, and given sertraline as gp thought i was very depressed, i am but thats because i feel ill all the time. I do take the thyroxine about an hour before food, but im sure i have read somewhere but cant remember where, that sertraline can affect thyroid and that you need more if you take sertraline. Ive also been given antiinflammatories and pain patches. I think in the very beginning i may have had an antibodies test but ive no idea of the result just told i was hypothyroid and to start on levothyroxine.

I just thought maybe an endocrinologist would help regarding taking enough levothyroxine. I live in manchester and don't really know which hospital to ask for anyway.

thanks again for your help.

Angel

[helvella Administrator Thyroid UK in reply to Angel54]

Angel,

That post was fine.

You are indeed right that some people find they need more thyroxine when taking sertaline (or similar anti-depressants).

"Administration of sertraline in patients stabilized on Levothyroxine may result in increased Levothyroxine requirements."

Read more: drugs.com/pro/levothyroxine...

If you tell us what anti-inflammatories and pain patches you are using we can see what interactions are documented for them. (They might appear on the link above.)

I encourage you to ask about antibody tests next time you see your GP - however long ago you had them done they might indicate if you have autoimmune thyroid disease.

I managed to find some mention of Professor J R Davies, Manchester Royal Infirmary in a web search but I have no further information. Can anyone help here?

Rod

[Maggiet in reply to Angel54]

Hello Angel

I used to live in Rochdale and I saw an endo privately at The Alex at Cheadle. His name was Dr Rob Davies - not to be confused with the other Davies at Manchester - he was brilliant, very down to earth and understanding. He referred me (on the NHS) to a Dr Selby at MAnchester Royal Infirmary. He was very good too and checked me out for everything - coeliac disease,adrenal failure etc - unfortunately at my follow up appointment I saw his registrar who was far less understanding and asked me what I wanted him to do! I told him I just wanted to feel better - not a lot to ask is it? I've moved to Scotland and am just in the process of sorting out an endo here as, although the GP seems very understanding, I think a consultants view would be more helpful. Good luck with everything.

Maggie

[Angel54 in reply to Angel54]

Hi Maggie,

Thanks so much for your message, thats really helpful, re seeing an endo, i think i may have to ask to see one privately too if my gp isnt willing to send me to one on the nhs. I will have to see what happens on my appointment with gp.

I hope you manage to get one sorted out in Scotland. plus i hope you start feeling better too.

thanks again

Angel

[lynmynott Partner Thyroid UK]

Hi Angel54, Hopefully your GP will increase your levothyroxine now. It might be worth asking for a referral to an endocrinologist as it will be free but don't expect it to be the answer to all your problems as some endos are not particularly helpful. Thyroid UK does not have a list of endocrinologists, I'm afraid. Mary Shomon has a top doc site - there may be someone on there. Dr Toft in Glasgow may be useful as he seems to be a bit more enlightened than some endos.

You may not be absorbing your B12 very well. Many people find they need injections. Best to keep an eye on your B12.

You may need to try the liquid levothyroxine if you are not absorbing the tablets very well.

Some people improve very quickly but it can take a few months, especially if you were ill for a long time before you were diagnosed. However, with patience and the right meds a lot of people improve dramatically.

[Angel54 in reply to lynmynott]

Thank you Rod and thank you Lyn Mynott for your help

Professor J R Davies at Manchester Royal Infirmary. Ive just found his name on the top doc site from Mary Shoman. Yes i guess it can take some time to improve as i was ill for ages before being diagnosed.and as im nowhere near in range yet.

my antiinflammatories are diclofenac and pain patches Bu trans bruprenorphine 15 strength

Thanks again for all your help i do appreciate it.

Angel