I'm 60 years old, and was diagnosed with hypothyroidism several years ago, although I had experienced symptoms for several years prior to my diagnosis, which my GP assumed was due to my age.
I have been under the care of a new GP, who has been reducing my thyroxine dose gradually. This is to lower the associated risks of heart disease and osteoporosis with too high a dose.
I was on 125mg daily. This wa reduced to 100, then alternative days of 100/75, and finally 75. My TSH levels had been coming down nicely, however my latest results have shown a sudden, significant and unexpected rise.
I have had a repeat blood test this morning, just in case the lab botched the sample, and I will be getting the results in a couple of days. However, my GP couldn't think why this sudden rise has occurred, and neither could the practice nurse.
Has anyone else experienced anything similar, please?
Thanks in anticipation!
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Wursty
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Is your doctor aware that a hypo patient will have a high TSH and low FT4/3, and when the patient starts taking thyroid hormone replacement - levo or other - the FT4/3 will rise and the TSH decrease? If he then starts decreasing the dose, the TSH will rise. That is how it works.
FT4 and FT3 are the thyroid hormones. TSH is a pituitary hormone that stimulates the thyroid to make more hormone. If your doctor is only testing the TSH, he can have no real idea of your thyroid status, nor whether you are over-medicated or not. It doesn't really sound as if he knows very much about thyroid, because it's somewhat unlikely that a dose of 125 mcg levo would put your heart and bones at risk. But, if he's one of these doctors that believes there is a connection between the TSH and hearts and bones - which there isn't - then he is just confirming his ignorance, and is going to make and keep you very sick.
I think it would be a good idea if you gave us the actual numbers: results and ranges, so that we can better understand what's going on.
Hardly surprising if you have had your Levothyroxine halved
Your now highly likely to be very hypothyroid
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies or if very under medicated
Ask GP to test vitamin levels
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Osteoporosis can be linked to being under treatment as well as over treatment.
I understood that the stuff about low tsh and heart disease/osteoporosis had been fully debunked on this site. I’ve read that T3 is needed to protect the heart.
I take high doses of T3 and recently tripped and fell so that my collar bone bent - it bent, it did not break. I conclude that I do not have osteoporosis. (My Bone Work colleague moved it back into place.)
Thank you all so much. My GP is phoning me, possibly tomorrow, with my results, so I shall ask her for numbers, results and ranges. I'll update on here as soon as I have them, although I know there will only be a limited amount of information available due to the fact that there are only certain tests performed on the NHS.
Just had a call from the receptionist at the surgery. Blood test results still the same, so not a lab error. Advised to alternate 75 and 100 dosages and get bloods repeated in four weeks. Couldn't ask for any further information. 😕
My TSH levels had been coming down nicely, however my latest results have shown a sudden, significant and unexpected rise.
Reducing levothryoxine does is EXPECTED to see TSH rise. Initially it will rise a little, then faster. If the doctor doesn't understand this, doesn't expect this, doesn't even seem to have an inkling, then they should not be treating anyone with thyroid issues.
I urge you to contact the surgery - ask for all your recent tests to be printed out for you. If you have any issues, ask for the data protection officer.
You should not need to use a formal Subject Access Request, but have a look here:
If your TSH has risen, it means you are on too low a dose. Surely your doctor must have expected your TSH top rise and thyroid hormones to fall as your dose has been decreased twice. That's how it works. In fact , there is a strong association between low thyroid hormones (T3) and heart disease in hypothyroid people. There is no evidence for greater incidence of osteoporosis in hypothyroid people with low TSH and thyroid hormones in the normal range, so I think that your doctor is probably treating you incorrectly
I had a time when I had been on Synthroid only same dose for many many years and my TSH was usually between .50-1.0. That test it shot to 3.77. I am hasi hypo, did not happen again but a year later went to T3/T4 combo.
This morning I went back to the nurse for my four week follow up blood test.
I asked for my most recent levels -
Free T4 = 12
TSH 5.02
I don't understand these figures, but I do know that this time last year, prior to my dose being reduced, my TSH was somewhere around 1.
I've got an appointment on January 16th with a new doctor. I couldn't get an appointment with my usual GP.
The exhaustion I feel is crushing, and I have so many other symptoms which have returned in the past few months. I have so much I need to do, but could fall asleep at the drop of a hat!
Your TSH is too high and should be 1 or lower... this is because you are undermedicated and need to increase your Levothyroxine by 25mcg and continue to increase it until your symptoms disappear and you feel well. Your Doctor is keeping you ill by not doing this and would change to a Doctor who actually knows how to treat thyroid disease.
Thanks Lora7again. Hoping that this new doctor will be better informed! The rise in my TSH levels was very sudden. My dosage has been reduced by 25mcg over the course of a year, but was 125mcg prior to that. The huge jump to 5.02 shocked and perplexed my GP, who thought it must have been lab error, but a repeat test confirmed it. Feeling very disheartened at the moment, because I know how long it will take to readjust my dose and feel any improvement. My youngest son is getting married at the beginning of April, and I have put on so much weight since my dosage was reduced. I start Slimming World on Thursday, in the hope that I can lose some weight before then. Sorry to be a moan. Thanks again for your continued support, Thyroid UK. 🙂
Slimming World is not what you need in my honest opinion. I never ever diet and try to eat healthy and when we are ill with thyroid disease cutting down on food is not good for you. I would try to eat a well balanced diet and cut out refined sugar and make sure there is plenty of fruit and vegetables in your diet. Try to avoid fizzy drinks like coke and drink plenty of water. As for alcohol, wine is quite high in calories and something like a gin or vodka with a slimline tonic contains less calories. I do have the occasional glass of wine but everything in moderation. I think you have put the weight on because you are undermedicated. I am not medically trained but I have read stacks of literature on thyroid disease and have joined many support groups in the US and here in the UK. I have recently lost 1 and half stones without dieting because I am in remission from Graves' disease. When I was bedridden I could not walk very far because I was exhausted and my fingers were puffy and my face looked swollen. This was because I was underactive. I now walk everywhere if I can but I do not exercise because that can give me palpitations because I have very high antibodies. This just my experience of keeping as well as I can and I am 60 but do not feel it at all. I did feel 80 when I was bedridden and my thyroid was underactive and my doctor refused to help me so I had to self medicate with Thyroid S. I am taking nothing at the moment and my TSH is 0.70 and I feel well.
Thanks Lora7again. I'm so glad that you are keeping well, that is fantastic - and very encouraging for the rest of us too!
I realise my weight gain is due to my thyroid, but I've tried everything to lose weight, and it just won't shift. I know that if I eat less and exercise more my thyroid will simply adjust my metabolism to recognise that as normal. I went to the gym every day for a year, thirty minutes on the treadmill, followed by thirty minutes on the weight machines. I didn't lose an ounce. I counted calories and wrote down everything I ate, and kept within my recommended calories. Didn't lose any weight at all. I did a voluntary health programme which lasted a year, walking a minimum of 10,000 steps every day and following a healthy eating plan. I was no lighter at the end of it. Slimming World is my last gasp attempt to lose weight before my son's wedding, as you can eat normal portions, but only specific foods - and as many fruit and vegetables as you like, so I will be eating plenty of those. I don't eat refined sugar often, and rarely eat biscuits and cakes etc. I have always cooked from scratch, and we eat pretty healthily normally including lots of fruit and veg, but this way I'll be weighed every week, and I'll be following a supposedly foolproof method of weight loss. If I don't lose weight, it'll be more evidence for my doctor that I need proper treatment, instead of being fobbed off all the time, which is how I feel at the moment. When I went to see my GP who is treating me at the last scheduled thyroid results appointment to get my she asked me "so what has brought you here today?" She hadn't even looked at my results, or my notes. Hoping that this new doctor I'm seeing on the 16th will be more helpful! 🙏
If your thyroid isn't working properly no amount of dieting or eating less will help I'm afraid. I had to buy my own Thyroid S from Thailand and do my own blood tests because my GP refused to help me. In his words "I will be struck off if I don't stick to NHS guidelines" I literally begged him to give me Levothyroxine as I had been given it in the past and I actually was exempt from paying for my prescriptions because I was hypothyroid at the time. He would not budge and would not refer me to a Endocrinologist so I had to take my health into my own hands with help from some fellow sufferers on Thyroid UK and other support groups in the US. I have Graves' disease written on my records and a multinodular goitre but they still go by blood tests and not symptoms. Mine were horrific my hair dropped out so much I had to get hair extensions and my nails lifted off the their beds, my vision was blurred and my skin was dry I showed him all the things that were wrong with me but all he would offer was antidepressants for physical symptoms. I don't think I am the only woman suffering this way. My husband has just told me the plumber we use has a wife who is getting no help from the NHS and she has an overactive thyroid. I have told him to tell her about this site so we can help her because the NHS are not helping her and she feels very ill and alone.
My nails are lifting off their nailbeds too. I've told my GP about my symptoms so often, and asked if I can be prescribed T3 medication as well as my thyroxine, but have always been told there's no possibility of me getting it in the UK. I honestly don't think doctors are fully informed about thyroid issues, and in my experience they definitely don't appreciate being challenged by their patients on the issue either! I've gone in with printouts of advice and information from Thyroid UK, and they don't want to know. Some of them have been very sympathetic, but the answer is still the same - Their hands are tied.
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