Recommend private Endocrinologist UK

[Sara333]

I have Hashimotos, however Levothyroxine left me in agony with sore feet. The NHS endocrinologist told my doctor to just take me off it and sent her on a wild goose chase to try and find other causes for my hypothyroid symptoms. My GP can only refer to that endocrinologist under NHS, so she has said she's happy to refer me privately to an endocrinologist to get my medication right. I'm taking betahistines for Menieres, but that's all.

What I need is an endocrinologist who'll consider what the correct dose is of levothyroxine (maybe it was too high or too low before), consider T3, consider Armour... I just want somebody who'll look at my blood tests, look at my symptoms and actually think about the treatment instead of saying it's Levothyroxine or nothing.

Can anybody recommend the right doctor please? I'm in London. Thanks

[shaws]

I'm sorry you've been unwell for many years. It is a fact that many patients do not recover their health on levothyroxine alone. I found levothyroxine was not for me as it caused me widespread muscle/joint pain. The fact is that if you are quire unwell before being diagnosed you don't realise for quite sometime that it could be hormone replacement fillers/binders might be the cause.

email [e-mail] who has a list of private doctors/endos and if you choose one, you can put up a fresh post giving the name only asking for a private message to be sent to you about the doctor.

Blood tests for thryoid hormones have to be the very earliest possible, fasting (you can drink water) and allow 24hour gap between the last dose of hormones and the test and take afterwards. Always get a print-out of results with the ranges. Ranges are important as labs differ and members comment due to the ranges of the tests as well as the results.

[Sara333 in reply to shaws]

Thanks, however I can easily find lists of private endocrinologists so that isn't necessary. What I am hoping to get here is recommendations for specific doctors who will consider a range of treatment options not just levothyrocine 100mcg or nothing.

[Jazzw in reply to Sara333]

Louise's list isn't just any old list - the names on her list are those recommended to her by Thyroid UK members and posters. That is to say, doctors more sympathetic to the idea that Levo isn't always the answer.

[Sara333 in reply to Jazzw]

Oh, ok. I guess I'll try that then.

[shaws in reply to Sara333]

There is a vast difference of treatment/opinions by Endocrinologists. It would be ideal if their advice/treatment led to relief of our clinical symptoms.

[kazb1966 in reply to shaws]

I saw my consultant at the hospital yesterday and asked about whether having bloods taken for thyroid test had to be first thing in the morning and the fasting. He said absolutely not. Bloods can be taken at any time and fasting is not required. I'm very confused. Can you please tell me why Thyroid Uk say this so I can put this to my consultant again. Many thanks

[RedApple in reply to kazb1966]

kazb1966,

Welcome to the forum. Commenting in the middle of someone else's post means your question is likely to get missed. So please start a new post with your question.

[shaws in reply to kazb1966]

I now don't believe many Endocrinologists know best. They also inform patients that the addition of some T3 to T4 is not feasible and wont make any difference when recent research from several different Research Facilities has proven that many of us feel much better when T3 is added to T4.

I was like you, I always thought they knew best, after all they've studied for years but when I wasn't improving at all (first of all not one doctor or specialist diagnosed me despite horrendous symptoms). Not one did a blood test and it was a first aider who suggested it as he could see my swollen gland.

It was Thyroiduk.org.uk (the website) who gave me back my life plus Dr Peatfield and Dr Skinner (RIP) and both doctors were trained in the 60's and could diagnose upon symptoms alone. The BTA etc didn't like that, nor the fact that both prescribed the original thyriod hormone replacement, called Natural Dessicated Thyroid Hormones, and both appeared before the GMC and Dr P resigned his licence due to the strain. Dr S appeared quite a few times as he was stubborn and knew the 'modern' method of diagnosing was wrong and left many, many very unwell indeed. He died of a stroke that his distraught staff believed was due to the strain.

Also I doubt your Endo would be pleased if you point out that he may be mistaken as we, on this forum, have found out what is best for us to get the best result from blood tests. For instance they mainly take notice of the TSH for diagnosing and adjusting hormones. They appear not to know that TSH is higher early a.m. and reduces throughout the day. So if you have an afternoon blood test the TSH will be lower than at 8 a.m. so doctor may adjust your dose of levo due to the low TSH and many members suffered with too low a dose.

[KarenCain in reply to shaws]

Mine was taken middlet of the day and was 10.8 but that's normal I'm so scared right now

[Citrine77 in reply to shaws]

Just reading this post, I am interested in your comment about levels of TSH. I have recently made sure my bloods are done in the morning, but used to have them done in the afternoon and the levels were always lowered after a test, but I am still trying to find a level that keeps me "normal". Oh to have a magic wand and an understanding GP. Reading one of the responses further down, it suggested to write down my thyroid journey and test results, which I shall now be doing and will post.

Thanks for your advice.

[shaws in reply to Citrine77]

TSH means 'thyroid stimulating hormone' and it is from the Pituitary Gland - not the thyroid gland. When thyroid gland starts to produce less hormones, the Pituitary Gland starts to pump out TSH to try to raise it.

THS has a diurnal response, ie. highest early a.m. and reduces throughout the day and can mean the doctor not diagnosing us due to the TSH alone.

I have just posted a new item which might be helpful

healthunlocked.com/thyroidu....

If you email Dionne at TUK she has a list of private doctors if you wish to consult: email below.

[e-mail]

[RedApple]

Sara333,

Whilst you're waiting for some replies to your request for doctor recommendations, it could be useful to get some feedback from members here on your current levothyroxine treatment. We have plenty of 'expert patients' here.

If you tell us more about your levothyroxine journey to date and post your most recent thyroid blood test results, members can offer suggestions based on their own experience and extensive knowledge of this disease.

[Sara333 in reply to RedApple]

As I said, I'm taking nothing except betahistinea right now.

I don't know the details. TSH of 7 I think. Antibody score was about 500 for one and 5 for the other.

[RedApple in reply to Sara333]

Was that TSH of 7 whilst on levothyroxine?

[Sara333 in reply to RedApple]

No, I think it dropped a bit, but I don't have that info. The endocrinologist from Guys said without even meeting me that returning to 7 was fine not to treat and she thought I have other illnesses causing my symptoms. I disagree because I have other symptoms but they are all hypo symptoms, hence why I want a different one.

[RedApple in reply to Sara333]

You are absolutely correct that it's not at all 'fine' to have a TSH of 7.

It sounds to me as if you were not on an appropriate dose of thyroxine and hence no chance of symptoms resolving.

[Sara333 in reply to RedApple]

Actually some got worse and some like sore feet were new. So I don't know if it's only the dose.

[RedApple in reply to Sara333]

Well it can happen that you get new symptoms when first starting treatment. It isn't always an easy journey and can take quite some time to titrate to the dose that's appropriate for you.

What dose did you get to before you stopped taking any at all?

[Sara333 in reply to RedApple]

100mcg

[Sara333]

Actually, it wasn't just sore, I couldn't walk without stabbing pain. Also my resting heart rate dropped 10bpm to mid 50s, weight went up, became insanely emotional etc. All started within 2 weeks of taking levo, all stopped a month or so after stopping it. So I'm back to my original periodic dizziness, falling over, exhaustion, etc. Although I don't have tinnitus any more because that got fixed as a side thing with the betahistines.

[RedApple in reply to Sara333]

Were you started on 100mcg levothyroxine or did you start lower and work up to that dose?

[Sara333 in reply to RedApple]

Started

[Sara333 in reply to Sara333]

I told GP it felt like my thyroid went from lazy to zero

[RedApple in reply to Sara333]

That may very well have been at least a part of the problem. It's usual to start lower and work up gradually. For example, start at 50mcg, test the blood levels after four weeks and increase if levels are not yet where they should be.

Starting on 100mcg may mean your body couldn't cope with the sudden influx of hormone that it's been doing without for quite some time. You may in fact have been overdosed right from the start.

[Sara333 in reply to RedApple]

I'm just scared to try again now

[puncturedbicycle in reply to Sara333]

Anecdotally, judging by what I read on this forum (I'm not a gp) it seems like too high a dose of thyroid meds can have this effect (painful joints and/or muscles). You could try a single dose of 25mcg (a quarter of your 100 levo tabs) and if the pain returns you have your answer. But I understand your reluctance.

I do despair when I read about someone w a tsh of 7 - apparently ok to go it alone w no meds - being dosed w 100mcg levo from the get-go. You may have been on double what you actually need, which would make you feel very unwell. The fact that your pulse went down rather than up could indicate that your body was trying to protect you from the excess meds.

I don't know what your doc was thinking.

[RedApple in reply to Sara333]

Understandable. But you need to do something very soon as things will go from bad to worse.

Many people who come to this forum end up learning how to take charge of their own thyroid health. As you've already discovered, most doctors are hopeless at dealing with this disease. But often they will do their best to work with you if you convince them you have some idea what you're talking about

You could consider going back to your GP and asking if s/he will work with you by starting on a lower dose (say 50mcg). Blood test for TSH and FT4 after four weeks and then take it from there.

From what you've told us in this conversation, I suspect this is what any private doctor would suggest to begin with anyway, so why pay for what you should get on the NHS anyway.

If in the end, levothyroxine proves not to be the right treatment for you, then would be the time to consider other options. But as levo is by far the easiest and cheapest treatment, which works for many people once they find the right dose, it makes sense to give it another go.

[Sara333 in reply to RedApple]

Thanks. I have considered that. The symptoms were so bad though and having the other endocrinologist opinion about not treating it at all, I just think maybe I need to talk to a different one.

[shaws in reply to Sara333]

It is surprising how woeful the diagnosis and treatment is in the UK. We seem to have a lack of sympathetic/knowledgeable doctors. I shall give you a couple of links and it is a case that we've to become knowledgeable with the help of those on the forum and it wont be too long before you get the hang of it.

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

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

You will see what the Professionals should really check and how low the TSH can be and also have severe symptoms. I bet if you asked a question about these numbers shown, they would answer. Also some people have a genetic defect in that the need T3 only as they cannot convert levo to T3 (T3 being the only active hormone)

Redapple is correct they've started you on too high a dose (50mcg is normal) with 25mcg increases every six weeks or so.