So just been diagnosed with TSH over 150, I am deeply confused 🤷🏼♀️ I felt fine considering I have a 1 yr old, I am very busy working 6am till 9pm as fitness trainer and renovating our home so we living in various places. I started drugs last week and feel awful with flu and my goodness the wind. 🤧🏃🏼♀️💨
I haven't been to see the Doc since being told I have this thyroid thing, I don't understand the under or over and why I feel so awful now is that because of the drugs? I am only in very low dose 25 for few weeks so didn't think it could be that.
Any help I would really appreciate please?!!!
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SickyVicki
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Welcome to our forum and I am sorry you have been diagnosed as hypothyroid.
We have become hypothyroid as our thyroid gland is not able to send out the 'hormones' into our body that drive our whole metabolism. Thyroid Hormones are required in the billions of receptor cells in our bodies. T4 (levothyroxine) is inactive and it's job is to convert to T3. T3 is the only Active hormone and it is required in our receptor cells.
When first diagnosed we are given a low dose to begin with, which is usually 50mcg with 25mcg increments every six weeks until the hormones are raised to an optimum level. Optimum means we feel good with no clinical symptoms. For doctors 'optimum' may mean that the TSH reaches somewhere in the 'range' but we need a TSH of 1 or lower.
We have to read and learn in order to recover our health. We are prescribed levothyroxine which is a prohormone and is also known as T4. It is slowly increased about every six weeks until our TSH is 1 or lower (not somewhere in range as most doctors think).
Blood tests have to be at the very earliest possible, fasting (you can drink water) and allow about 24 hours between last dose and test and take it afterwards. This helps keep TSH at it's highest as that seems to be the only thing doctors take notice of. Levothyroxine should be taken first thing on an empty stomach with one full glass of water and wait about an hour before eating.
Your dose of 25mcg is small, usual starting dose is 50mcg with a blood test every six weeks with a 25mcg increment until you feel much better with relief of symptoms.
It will be difficult with a youngster to look after as well but hope you respond to levothyroxine quickly.
Thyroid hormones are T4 (inactive) - levothyroxine. T3 (active hormone) required in our billions of receptor cells. If we are not on optimum levothyroxine (your dose is low) we cannot convert T4 to T3 sufficiently.
So I'd ask your GP to increase dose to 50 immediately. He may want to take a blood test so follow procedure above, i.e. earliest/fasting.
Ask GP to also test B12, Vit D, iron, ferritin and folate as deficiences are common an can also cause symptoms.
Activity uses up T3 which might rebound if you aren't yet on optimum especially doing an active job .
Always get a print-out of your results with the ranges (ranges are important as labs differ) for your own records and you can post if you have a query.
Welcome to the forum! I can understand your confusion and yes lots to learn. It baby steps. With a TSH that high I would ha e thought he may have started you on a higher dose of Levi or T4. The TSH is a messenger from the pituitary telling your body that it needs some thyroid mess to make you feel better and so the higher the number the more it is shouting so let's say it's screaming.
Your doctor has given you a very low dose to let your body get used to it. I was started on that amount a long time ago but now you can be started at 50 but no matter, you will soon catch up I hope he has told you to return in 6 weeks for a retest? It takes 5-6 weeks to get that dose fully in your body so then he should test again and if necessary increase the dose and repeat until you are stable. This. An take some time but you can't speed it up so patience is needed and hopefully you will start to feel better as time passes.
The bessway for you to start your learning curve is to look on the Thyroid Uk site, they run this forum, as lots to read and understand but as I said you can start with baby steps but make sure that first you read on how to take the medication and thinks to do and not to do. Shout out if anything you don't understand and hopefully soon the TSH will start to fall and in a few weeks you may notice the difference. But nothing will be apparent until the Levotgyroxine starts to build up.
Odd that you felt fine and had lots of energy before with a THS that high. Normally you would be coping to function.
Sometimes a high THS can be caused by a pituitary problem. I would get this checked out asap so you are not taking thyroid meds unnecessarily.
Hypothyroidism - This is a condition that is defined by your body failing to produce enough hormones to adequately manage your metabolism. Patients suffering from this condition will typically experience dry skin, increased sensitivity to cold, thinning hear, impaired memory, muscle aches, puffy face, unexplained weight gain, constipation, fatigue, hoarseness, elevated cholesterol, irregular menstrual periods or depression.
Doesn't really sound like you?
You also need your thyroid antibodies checked to test for auto immune thyroid problems.
and Folate, Ferritin, b12 and Vit D if it is found to definitely be hypothyroidism.
If you felt well before and they've diagnosed you off tsh I would look for another reason for the high tsh. With what I know after years of this it would have been very helpful to have a full thyroid panel test first (ft3 ft4) to check those levels needed medication (most gps aren't even allowed to do t3 blood test -people on here get a private test - there's lots of info here). I would keep a diary of blood test results starting with how you felt before you started meds and then dose changes etc. So that when you see your GP you have a clear history. GPs think levo is an innocuous drug 'that just replaces a hormone'. But that hormone mucks with everything in your body. For 85-90% of hypothyroid patients levo is good. For the others it can poison them.
I agree with loueldhen and Katepots. Why did you go to see the doctor in the first place? What led to the blood test? There's no way you would be able to keep going like you are if your TSH was 150 due to hypothyroidism. Were there any other results? FT4 and FT3 for instance? I wonder whether a decimal point slipped in the lab, or you happened to have your test go through on the same day as someone else with the same name (it does happen).
I went to get bloods to start ball rolling with IVF for 2nd baby. I am going for more bloods tomorrow and take it from there, this seems far more complicated than I originally thought. Now sitting here with what only can be described as flu I am really worried I can't work like this and if I should if started with the drugs at all.
This is an extremely high and strange result. I've experienced having a TSH of 150 as my thyroid was surgically removed, and I can tell you I was not running after a child or doing fitness training! I was lying completely still on a bed, barely breathing, with gray skin and two big bruised, eyes with the skin cracking off my eyelids !
You really should get a referral to an Endocrinologist, and you should have not only TSH but also freeT4, freeT3 and thyroid antibodies all tested. This is because T4 and T3 are the storage and active form of thyroid hormone. The usual story of hypothyroidism is that these hormones are too low. This causes the TSH to raise high. Ideally, when healthy, the TSH is around 1. When the thyroid starts to fail it goes up to 3, 5, 10. The highest I've heard on this forum in recent months is about 20. It seems hard to get much higher than that while the thyroid still exists and is doing even a tiny bit.
But TSH is produced by the pituitary, which is part of the brain. And this process can go wrong, the pituitary can get bad at detecting how much hormone is in your body, or the pituitary can just go crazy and start pumping out TSH. This means the TSH has nothing to do with how much thyroid hormone is in the body, and a person can have high TSH, but have no problem with their thyroid hormone. Instead the problem is located in the pituitary. As the pituitary controls a bunch of other hormones and things this is a different kind of illness to being hypothyroid. This is called Central or Secondary Hypothyroidism (having low hormone is Primary Hypothyroid).
You need to make sure you've been tested out to check for Central Hypothyroid. Many GPs (and even Endos) can be terrible with this! They will just glance at one blood test and then fob you off.
If possible I would reduce your hours at work and take it a bit easy. Whichever way this turns out, you have a serious chronic illness. It can take ages to get your diagnosis and medication sorted, and things can get worse before they get better. But also these conditions can deteriorate when you're putting a lot of stress on your body. The biggest symptoms of thyroid illness is fatigue, not having the energy, muscle strength, and cognitive ability that you used to have, which can also cause depression and other mental illness if you're not able to rest enough.
What drugs are you on beside thyroxine 25mcg? That is a ridiculously low dose for such a high TSH.
If your TSH really is 150, you must know ASAP whether you have Hashimoto's autoimmunity. To gauge the total state of your thyroid system, you need more than just a TSH test. I am suggesting the full panel TSH/FT3/FT4/rT3/TPOAb/TGBAb.
I suspect you feel unwell because you are tremendously under-dosed. However if you get your T4 dose up and your TSH down to, say, 1.0 and still don't feel well, then it is likely that you aren't converting T4->T3 well and/or you have nutrient deficiencies.
Hi SickyVicky, seventeen years ago I went to see my GP because I had injured my knee from too much jogging. He took lots of blood tests. After a couple of days I was asked to come to see him because they had found my TSH was 147. I was put on Levo 25 then 50. These tablets made me feel and look so ill after having been perfectly fit and healthy with a rather challenging job where I needed to be on the ball 24/7 . After three weeks I called the doctor and said I cannot continue to take these tablets because they are ruining my life and making me feel really unwell. After a couple of months I was persuaded to try Liothyronine (t3) instead. I had no reaction to this hormone what so ever and I have been on t3 ever since but who knows for how much longer. Why are you on ATM?
That sounds like me and desperately can't feel like this with a self employed fitness job. Yes I am on Levo 25 for 2 weeks then up to 50 for month then more bloods to see. However I have flu and feel so low, bloated, aching, windy etc and off work which isn't me at all perhaps I should change drugs? Thanks for your advice, feel like I should stop them all together
Brilliant advice given above SVicky, one little point I would like to add is that on two occasions (in ten years) when I sunk into serious hypothyroidism (once caused by my Endo and the second time by my own hand doing an experiment) I found that the first symptoms was a reduction in my immune system. I rarely get ill with even colds let alone 'flu but on those two occasions I had to stay in bed four days with terrible flu and then cold after cold after cold. I found that I spent a lot of time lying on the sofa feeling miserable, sniveling and half asleep. I tell you this because this is a strong early indicator that you may be finally suffering from hypothyroidism.
Thanks this is very helpful however I really don't want this flu to be related to hypothyroidism 😱 I can't do my job like this. Going for more bloods tomorrow and then back to docs.
Hi, some people who have already replied to you have wondered how you were coping with your result was so high. I went to the drs because I was loosing weight, not feeling ill at all, just knackered all the time, but as usual us women just carry on! I was initially given the result as borderline hyper, but once a 2nd blood test was taken, i was rung from the hospital and asked to get levo immediately as I went to severe hypo and with a count of over 100. I was increased to 100mg a day, but found I was unable to slow my heart rate and am now on 75mg and 100mg alternate days. I still feel a fraud, as I am still not feeling ill, nor do I have time off work, but I am still knackered all the while. My iron and other levels have been checked, and even diabetes, but they are all ok. I was also confused how I had gone from one to another, the endo said that whilst I was hyper (which from the symptoms, I could have been for years!), i damaged my thyroid, and now it is not working
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