TSH of 99.9: I'm hoping for a little guidance - I... - Thyroid UK

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TSH of 99.9


I'm hoping for a little guidance - I keep reading that people feel proper unwell with a TSH of +5.

My levels were first tested in April 2017 - TSH was 99.9 (range 0.3-4.2) and free T4 of 4 (range 12-22). I was out on 50mg Levothyroxine.

I am now TSH of 90 with a free t4 of 9.3. My doctor has doubled my dose to 100mg Levo, but doesn't seem that concerned.

Symptoms-wise, I originally had extreme vertigo and low BP which has now corrected itself. I get sleepy in the afternoon, but I have a 10 month old so I guess that's par for the course? My hairdresser says my hair is a little thin at the back, and my ankle (just one) has gone all dry. But other than that, I feel okay?

Does anyone know why I don't feel absolutely dreadful? I'm not complaining, just confused.

6 Replies

I can only guess, I don't know a definite answer...

The speed at which someone's thyroid fails, and the speed at which the rest of the body starts to fail as a result, varies from person to person.

If the decline in thyroid health is long and slow then all sorts of things can go wrong throughout the body.

But if the decline in thyroid health is fast then the rest of the body won't have had time to start going wrong and falling to bits yet.

There are exceptions to everything, but in general it seems to be the people whose thyroids fail quickly who tend to recover more, and more quickly, than the people whose thyroids fail slowly.

Your doctor should be testing your thyroid every 5 - 6 weeks. If your test results show you are still under-medicated then you should be given an extra 25mcg levo per day, then you would need to be tested again in another 5 - 6 weeks. Your doctor was probably right to double your dose to 100mcg at this early stage with your very high TSH, but he was wrong to make you wait so long between tests. The cycle of 5 - 6 weekly testing followed by a 25mcg raise in dose should be repeated until your test results are healthy and your symptoms have resolved.

I was first told my thyroid was "borderline underactive" in the early 1990s. I got my first prescription for Levo in 2013 when I was still being told that I had "subclinical hypothyroidism". I had to really beg for that prescription. So I spent at least 23 years with low thyroid hormone levels. In reality I would say I've been hypothyroid since childhood. I'm in my 50s now. I've had a lifetime of ill-health. My experience of long-delayed treatment is really common on this forum.


Welcome to our forum,

Doctors are the least educated in the diagnosis and treatment of thyroid disease, so we have to 'do it ourselves' and get knowledgeable by reading posts here and asking questions.

First, I know how unwell you would have felt with a TSH of nearly 100. That's was mine at diagnosis - which I had to do myself!

A 50mcg of levothyroxine should have been for six weeks only with a blood test and increase of 25mcg every six weeks until your TSH is 1 or lower. It should be taken on an empty stomach with one full glass of water and wait an hour before eating. Food interferes with the uptake.

Make an appointment now for your next blood test now for the very earliest appointment, fasting (you can drink water) and take hormones (levothyroxine) afterwards. This helps keep the TSH at its highest and doctors are apt not to increase dose when the TSH reaches somewhere in the range - your range (range 0.3-4.2) ,

The aim is to get your TSH to 1 or lower, with a good Free T3 and Free T4 which is rarely taken. You should go by how you feel and as your TSH is so high it will take a while for you to feel an improvement.

Always get a print-out from now on with the ranges for your own records. You can post if you have a query.

You have got used to your body working without sufficient thyroid hormones. They run our whole metabolism from head to toe and our brain and heart need most.

Ask your GP at the next test to check B12, Vit D, iron, ferritin and folate. Your hypo could have happened due to your pregnancy. This is a list of clinical symptoms.



I agree with all that humanbean has said. It seems that the levo is working well for you so far. I think there is a difference or there was for me anyway between having an afternoon nap and feeling energetic the rest of the time or feeling tired all the time and going to bed day time because I felt so drained. I wouldnt worry about not having terrible symptoms, it is clear the levo is helping re verigo so you need it ( I had the vertigo) and I would imagine your hair and dry skin and perhaps your stamina will improve over time.

Do chase GP to test blood more often and ask him to do vit d, ferritin, folic acid and B12 while you are at it especailly if you are breast feeding. Vit D especailly important for babies health and preventative of all kinds of conditions later in life. There is an organisation called the vit D council who can advise on appropriate supplements for you and baby.

I'm a person who I think is worse than most, I was more or less bed bound for several years, and although I can move around the house a bit now and go on short outings, my stamina is very low.

There doesn't seem to be any rhyme or reason to why there is a lot of individual variation. I'm sure the thyroid, how it's regulated through the brain and chemical messages, how the thyroid responds, how the hormones it makes get carried round the body, then used by all the different cells and organs, is all more complicated than medicine acknowledges at the moment.

I've been on this forum for about 3 years, and occasionally someone comes along with similarities to you. Some have high TSH but feel totally fine.

Thank you all for your different advice and perspectives. I have booked into the doctor to have my vitamin/mineral levels checked, as I have had my TSH and Free T4 last week. I'll be asking for the Free T3 but I suspect it will be met with some objections as it seems that doctors don't seem to freely want to do it.

I honestly think it's a boon and I am not complaining as I know that hypothyroidism can be and often is debilitating. I just am fearful that there is something in the post, so to speak, and I want to concentrate on bringing my levels to a normal range so as to minimise any damage. I'm 30, and hope to be able to manage this illness as best I can.

Again, I really appreciate any help and advice as it's such a complex and far-reaching condition, and I am doing my best to understand it in my particular circumstances. All the best to you all.

Mine and my identical twin sisters TSH was 177.7 when we were diagnosed 10 years ago. I had been going to the dr for years with bowel problems. I was always cold, hair fell out, heavy periods, low mood, joint pain etc. Because I wasn't over weight I was never tested for thyroid problems. Was finally tested when in hospital with tummy pain and had my appendix removed. I started on 50mg and my neck swelled up. Was put up to 100 after 6 weeks then 150 6 weeks later. I have always managed to work full time and lead a busy social life too. I still have severe bowel problems and had 1/3 of my large bowel removed 2 years ago because I have slow transit consterpation and kept getting bowel obstruction. Pleased your not suffering to much. Find out as much as you can about the illness as the Drs arnt great to be honest.

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