Desperate for advice about sub clinical hypothyroidism

[Samra83]

Hi all,

I've had problems with severe fatigue for 11 years, and also of depression- also severe. My first depression diagnosis was 11 years ago, when I went to university GP complaining of severe fatigue, cursory blood test showed no overt hypothyroidism- but don't know if it was borderline then - so GP diagnosed depression and sent me packing. Since then, depressive episodes have become very severe, really complicated, life threatening, and extremely debilitating. But when not depressed I have yet gone through phases of such exhaustion that I can't sit up, and my heart palpitates/skips beats- like it's going to explode, and also have had pretty bad fibromyalgia pains for the last 5 years. These are issues I've been to GP about- thyroid test 5 years ago came back borderline, and GP said it was fine just needed to monitor it. Now I've been in a prolonged episode of depression- 2 years, which caused a really bad accident in which I broke my pelvis, have switched meds, been treated by the crisis team etc etc. in January I asked for my thyroid to be tested again- and again it came back subclinical - though I can't remember exactly how high the TSH level was. This was done through the psychiatrist. Anyway, months later, life is still at complete standstill... And though have come through the worst of latest 6 month depression, this horrendous exhaustion persists- I'm operating on about 20%- one day of activity leads to 5 days in bed. On top of this, the palpitations are pretty scary, I'm getting regular headaches, my hair is falling out a lot. So I did another google, and this time discovered the subclinical hypothyroidism is in fact a recognised, treatable dysfunction- all my various doctors had given the impression that it wasn't an issue, just it could develop into one. It also makes sense of a variety of other symptoms I haven't paid my attention to - I'm always cold, my fingers tingle, my skin is a bit dry.

So, as it seems to be that I have a whole range of very developed symptoms, and evidenced sub clinical hypothyroidism, and that despite of this, all my doctors have failed to mention that it might indeed be worth treating, or further testing at least....?!!!

I am so desperate to force my GP to ordering a blood test.... But I'm worried that this is a really long frustrating route...when, I've been waiting 11 years already, and frankly shocked at the thought that all my years of the most unbearable depression might have been prevented or at least alleviated!

Sorry to waffle... I feel very alone with this! I trust that you guys are the real experts, so any tips about how to proceed, what to ask for what to watch out for etc etc.... Or even if you think that I'm not totally mad in thinking a good old dose of thyroxin may help!!!

THANK YOU!!!

S

[Clutter]

Samra, I'm sorry you've had such a difficult time and are still struggling.

Subclinical hypothyroidism is diagnosed when TSH is above the ref range, usually >5.0 and FT4 and FT3 are within normal range. I think your psychiatrist would have ruled out hypothyroidism before treating you for clinical depresssion but as you have previously been told you are borderline your GP should agree to a follow up thyroid test. Try to have the blood test early in the morning when TSH is highest and ask your GP to test thyroid peroxidase and thyroglobulin antibodies to rule out or confirm autoimmune thyroid disease (Hashimoto's).

thyroiduk.org.uk/tuk/diagno...

[Caze]

Samra

You are not alone. Lots of people on this site have been through years of poor health and many are now well. They will be able to give u valuable help and support.

Yr thyroid is a big unresolved issue for u and yr GP does not seem to be helping much. I would suggest, in the absence of yr GP allowing a trial of a low dose of thyroxine, that u request a referral to the Endocrinologist of yr choice under the choose and book scheme.

[Samra83 in reply to Caze]

Thanks for the tips, I'm going to do it tomorrow morning!

[shaws]

I am sorry you have had a long and awful struggle to get a diagnosis. Before the blood tests were introduced in the '60's patients were diagnosed on clinical symptoms alone and given thyroid hormones (natural thyroid hormones at this time).

Blood tests were introduced with the TSH along with levothyroxine as the best hormone replacement, being a synthetic generic hormone. The TSH should have been used in conjunction with clinical symptoms but over time this has been forgotten. GPs also nowadays have little knowledge except diagnosing by the TSH alone. It is bad luck if TSH doesn't rise sufficiently.

We have to read and learn so much about the thyroid gland in order for us to recover our health. This is a list of symptoms and I am sure you will be familiar with quite a few..

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

[Dakini19]

I so feel for you. After 7 or so years of extreme exhaustion, hair loss etc. I developed carpel tunnel sydrome which can be a sympton of hypothyroidism. (I see you have tingling in your fingers, a sure sign!) I had been having regular thyroid testing but all were 'in the normal range' (although borderline I think) Thank goodness for my GP who looked at my pathetic hair and said he thought it was my thyroid and put me on thyroxin,. I've been on it for 20 years or so now and dread to think what would have happened if it wasn't for my doc. I am generally fine. Dips in energy I put down to lack of absorption due to IBS and work with that with diet. Recently cut out gluten which makes a big difference. You need to see an endocrinologist who needs to test free T3. Don't be fobbed off, Insist on a trial of thyroxin. Best of luck!

[Maui52]

so sorry you have been feeling so unwell. I have had problems with my GP not listening to me even though I have been on thyroxine for 30 years, once I changed from eltroxin to Levo, I have felt terrible. You need to insist on another blood test and post the results on here as I know that clutter is very knowledgable about these. And if you are not happy with GP then request an appointment with an Endo or change your GP.

Good luck

[MLML6]

Hi Samra83,

I was in a very similar situation to you - subclinincal hypothyroidism with a myriad of debilitating symptoms like yours until one day I couldn't get out of bed anymore and my life stopped altogether - it was very frightening. NHS doctors don't recognise this as hypothyroidism and following the guidelines will, therefore, not treat these patients nor investigate other causes such as adrenal fatigue/insufficiency (which they don't recognise either) or vitamin and mineral deficiencies. Instead they offer anti-depressants, which do nothing to get to the root cause of the problem. If you look at the websites below, you'll see there is a problem with the TSH blood test which is totally inadequate to diagnose hypothyroidism in so many people. 'Normal' TSH ranges vary even within the UK, but in countries such as the US and Germany the 'normal' range for TSH was changed some years ago to enable patients being treated much earlier. Monitoring these blood test results until years down the line they may be bad enough according to UK guidelines that they merit treatment, doesn't help you because you're just on a downward spiral until it's so late that you have all sorts of damage to your body, which may well be irreversible. It's a waste of your time, energy and, above all, your health.

I highly recommend you read the following books: 'Adrenal Fatigue - The 21st Century Stress Syndrome' by Dr. James L. Wilson, 'Your Thyroid and how to keep it healthy' by Dr. Barry Durrant Peatfield, 'Diagnosis and Treatment of Chronic Fatigue Syndrome - it's mitochondria, not hypochondria' by Dr. Sarah Myhill, 'Pernicious Anaemaia: The Forgotton Disease - The causes and consequences of Vitamin B12 Deficiency' by Martyn Hooper, 'Stop the Thyroid Madness' by Janie A Bowthorpe, and 'Recovering with T3' by Paul Robinson. Apart from Dr. Peatfield all the above authors also have excellent websites. In addition to the very informative Thyroid UK (TUK) website there are also other additional websites you might find useful - see e.g. Thyroid Patient Advocacy UK (TPAUK) and the US website thyroid.about.com. If you are desperate and need to speed things up there are ecological, functional, naturopathic, holistic doctors who are knowledgeable and experienced in treating adrenal fatigue and hypothyroidism despite 'normal' blood tests who will include in their treatment plan adrenal support, CoQ10, nutrition and the use of the right doses of vitamins (esp. B12, D and C) and minerals and consider accompanying conditions such as Candida Albicans.

I can only say that you have to acquire the knowledge about your condition yourself - only an informed patient can make informed decisions about doctors and treatments - and this condition is not a one-size-fits-all problem. Even if it looks daunting at first, it's not that difficult to understand - once you start reading things will make sense, and it will be a relief to know that it's not 'in your head' and that it's not a psychiatrist you need but the right treatment plan to support and build up your body.

I sincerely hope this helps you and I wish you all the best for your recovery.

[Samra83]

Thanks everybody! I have been a bit dismayed about the prospect of starting at the beginning, and waging battle with people over it! But it's encouraging to see so many people so well informed about the topic, which can only be a good thing!

MLM, same happened to me in May- one day I could get out of bed, in fact I could hardly move at all. I put this down to psychomotor retardation- though extremely severe version- which is common with depression, and so switched anti-depressants. But that was 6 months ago, and I'm on a very high dose of venlafaxine and still the exhaustion persists.

Luckily my new GP is very good, and because my depression has been so bad, she takes my case seriously. She said she would give me a bloodtest form, and said they just tick the 'thyroid function' box at first, and full blood count, and do follow up tests as necessary. So, I'll do the test tomorrow morning, and have an apt on Friday. My plan is to go armed with articles, and info from TUK, as well as a comprehensive medical history for the last 11 years, and then to plead, and cry as necessary until I get a thyroxin trial!!

I will report back then!! In the mean time, I'll try and get those books!

Thanks everyone!!! So nice to feel suported!

All best,

Sam

[MLML6]

Hi Samra83,

Make sure that you get the range of thyroid tests - not just TSH but especially free T3 and free T4 (there are also other tests, e.g. antibody test - see websites), and you might want to ask for iron, ferritin, B12 and Vitamin D test (check on TUK & Dr. Myhill's websites). See vitamin B12 deficiency symptoms in Martyn Hooper’s excellent book – the symptoms include severe depression amongst the many others, as indeed does Vitamin D deficiency.

I think the adrenal test on the NHS is only done via blood – this is another controversy. However, Genova Diagnostics do a saliva test which is spread over a whole day and gives an accurate picture of adrenal function (see Dr. Myhill's website & Dr. Peatfield's book). Diagnosing and treating the adrenals if necessary is very important - see e.g. Dr. Peatfield's Book, Dr. Myill and all the other books & websites above.

You may want to look into 5-HTP - a possible alternative to anti-depressants - can be bought in nutritional pharmacies/shops. Dr. Alyssa Burns-Hill (see Thyroid UK Trustees) said at the TUK conference in October that she works with this product (amongst others) with very good results. I would think many of the ‘alternative’ practitioners have experience with this.

Enjoy the reading and good luck!