Consultants and Drs change the levo by 25ml and within the space of a month or so the TSH swings quite dramatically. 9.2.21 TSH was 1.11 however hospital TSH taken on the 16.1.21 was lower the .35 which was the lowest of the range. I have been gluten free for two years and it has made no difference. The constant swing from high to low TSH is due to medicine dosage. I feel very ill when TSH is to low or high at 8.21. I've lost most of my scalp hair, nearly lost my job due to symptoms. They alter the dosage but there isn't a right dose and honestly can't stand it anymore.
So the big question is. How can tsh be balanced. Thanks
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Karen154
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Dosing by the TSH is wrong, wrong, wrong. Of course it's going to swing dramatically. You're only over-medicated if your FT3 is over-range, and they won't even test that! So, next time they want to reduce your dose, refuse unless they test your FT3 first.
Hi, thanks for the reply. The hospital tested my T3 . There is no option on the site to upload this. I don't remembered the range for T3 but it was at 4.0 I have previously taken T3 and increased it to 6 which is high . Seemed to increase the hair loss. My hair is awful now and don't want to leave the house.
Well, just saying it was 6 and that was high, tells us nothing. Most FT3 ranges go up to 6.something, so it wouldn't be that high if that were the case. But, if you felt well with it at that level, then they should not have reduced the dose.
Have you had your nutrients tested: vit D, vit B12, folate and ferritin? Low levels of nutrients will affect your hair badly.
Hi, thanks for the reply. It is difficult without ranges. Odd the consultant wouldn't add them to letter. It isn't worth uploading the letter as she hasn't provided structured blood tests.
When I was taking T3 in addition to T4 they were all withing normal range. TSH was only slightly low. But I felt very over treated. My hair fell out from every where.
They never do put the range. They don't like giving us our results at all, and probably figure that if they don't put the range, we'll be none the wiser and unable to argue.
In what way did you feel over-treated. Results just being in-range doesn't mean much. It's where they fall within the range that counts.
There can be so many reasons for hair loss, including nutritional deficiencies. So, have you had your nutrients tested?
Could you persuade them to change the dose by less than 25? My GP wanted to lower my dose because she said the TSH was too low. I was on 75 mcg, and she agreed to let me lower to half a 137 mcg tablet, and I feel much better even though the reduction was so small. I don't know what that has done to my TSH yet as my next blood test isn't for another 6 weeks. If it's still too high I'll ask her for half a 125 tablet, that way the change in dose isn't so dramatic.
Hi there, as far as I'm aware there is only levothyroxine issued in the UK. This prescribed at 25,50,100ml possibly 200ml.
We dropped dose from 100ml to 75ml about three weeks ago and I feel much better. But I won't for long. The hospital did a test and the was lower then .35 very low. T4 was 15 and T3 was at 4.00 The endocrinology Dr didn't list the ranges in the letter so I would have request this from the hospital. But she stated not to change anything. I had to because my hands were burning and my lashes were falls lashes out. I list my eyebrows years ago with thyroid.
Anyway, a private dermatologist did a the test a few weeks after changing the thyroid dose and the this was then at 1.11 so probably much higher now. T4 will probably be very low. I have to wait another two months for the GP to test my TSH again. In that time scale I will be in a terrible state.
I take Levothyrox in France and there seems to be a better range, we have 25, 50 75, 88, 100, 125, 137... A change of 25 mcg made my TSH drop from 2.89 to 0.14 (low threshold 0.27) which is why I was nervous about reducing the dose again. I hope you manage to find a solution and are feeling better very soon.
Before I had any medication, TSH was 5.8 (0.27-4.2) and T4 was 14 (12-22) (Don't know T3 as the doctor didn't ask for it and I didn't know it existed at that point). After taking 50 mcg for 6 weeks TSH was 2.9, T4 was 20 and T3 was 4.4 (3.1-6.8). Although there were immediate improvements, (no more weird optical symptoms or tingling in my face, severe aching neck and shoulders improved a lot) I was still feeling really tired, and constipated, GP agreed to up the dose and increased to 75 mcg. Much less aches and pains, and finally no more constipation but after 8 weeks TSH 0.26, T4 23 and T3 4.8. GP wanted to reduce but I persuaded her to let me wait a couple of weeks more. By then TSH was 0.12, T4 had dropped to 20, but T3 was better at 5. I felt good, but GP wouldn't consider T3 and wanted me to drop to 50/75 on alternate days so we compromised at half a 137 mcg tablet. Actually I feel better than at 75, almost no ache in my neck muscles anymore and my heart feels more normal. I hadn't realised until I made the change, and it's difficult to explain the feeling, but my heart rate a bit odd and I felt a bit breathless when I made an effort, e.g. climbing the stairs, even though I run regularly. I'm crossing my fingers all will be well when I go for the next blood test in 6 weeks!
In the UK we do actually get tablets of 12.5, 25, 50, 75 and 100 micrograms.
However, each manufacturer only produces some of these dosages. (Except Teva who have all of them.)
A drop from 100 to 75 is a whopping great 25% reduction. That sort of change would make little difference with a medicine such as paracetamol. But thyroid hormones need careful, fine adjustment.
If you needed a reduction from 100, it is perfectly possible to go to 88 a day. (Whether you take 100 one day, 75 the next, get the 12.5 microgram tablets, or split 25 microgram tablets to achieve it.) There is nothing which forces adjustment always to be by 25 micrograms.
And if you are not always getting the same manufacturer's products, that could also be affecting you.
If you get one manufacturer's product for one prescription, and another for the next, that can cause significant changes. Some people just don't do well on some products but do better on others.
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
Do you have Hashimoto’s?
When were vitamin levels last tested
What vitamin supplements are you currently taking
Ask GP to test vitamin levels
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)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Hi, thanks for your reply. I will read the posts property when I finish work. A private dermatologist did a wide range of tests. I have uploaded them today on two posts. Liver,kidneys iron and hair loss. There are two sheets of tests. I'd be grateful if anyone could take a look.
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