My GP recently lowered my Levothyroxine from125 to 100. Because of ad normal results although I had no symptoms. I now have severe symptoms of weight gain, extreme fatigue, dry skin, loss of hair. within 4 months of taking 100 doseMy result are now within'normal' range I'm told but Antibodies are 15 when they like them to be under 5. sorry I don't know range or units. This is a NHS result.
Should I be concerned? Does my dose of Levo need adjusting due to Antibody results?
Thanks in advance.
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doityourself
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doityourself do you know which antibodies the medics are talking about? Most of them ignore antibodies. Do you have results for TSH, T4 andT3 levels, with their ranges. Figures in brackets. Sounds like your levo shouldn’t have been reduced but seeing lab results would be very helpful.
levels of antibodies have nothing to do with Levo dose ... changing dose has no effect on antibodies , and doses are not adjusted based on antibody levels ... dose of levo is adjusted based on TSH and ft4 levels and symptoms.
Assuming they are TPOab ( thyroid peroxidase antibodies ) , if they are over range ,these simply confirm the cause of your hypothyroidism is autoimmune.
TPOab levels will go up and down, and over many years they usually reduce somewhat mine were >3000 at diagnosis , 20 yrs later they are about 100 . In autoimmune hypothyroid patients ,it is likely they will always be over range as there is no treatment for the autoimmune aspect .
Thank you for your reply. You've answered a question I didn't ask but have been wondering about, whether antibodies simply confirm autoimmune and whether they are relevant to dose levels
Ask at reception for a print-out of your results - that will have the ranges on it. You need to know exactly what was tested and exactly what the results were - never take your doctor's word for anything, always check - and keep your own records. It is your legal right to have that copy, they are your results.
See exactly what was tested. Frequently only TSH which is totally inadequate
B) Get FULL thyroid and vitamin testing
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Testing options and includes money off codes for private testing
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In days before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70
Do you always get same brand of levothyroxine at each prescription
Thank you for all the testing information. I will make use of this.As I have Pernicious Anemia I have b12 shots every 4 weeks which seems sufficient. There can't stop taking b12.
I felt absolutely fine on my 125 Levo dose so feeling very cross that it's been adjusted and now I'm feeling half dead! I will check whether supplier if Levo is the same.
Im not able to take my Folate regularly as it causes constipation and I'm awaiting surgery for a severe prolapse atm.
I can see the time for independent testing has arrived!
the best way to keep track of it all is to download the NHS app and get a log in from your surgery. Nothing is hidden it’s all there for you to navigate test results from everywhere consultations letters everything 😊
Having too low TSH can affect your heart as well like it did mine but I do feel better on my lower dose 125 from 150. Is there another doctor in your surgery you can talk to?
How can the TSH affect the heart? The TSH is a pituitary hormone, which is sent in response to your levels of T4 and T3. If you also have high levels of T4 and or T3, then yes, over-range levels can affect the heart and increase your heart rate or can cause palpitations. The TSH itself cannot do that as it is just a hormonal signal. And in any case, in some people with thyroid disease, the TSH-T4 feedback is not working as it is in a person without the disease, so the TSH response when taking levothyroxine is not a reliable measure!
GPs always muddy the water with these comments, a low TSH as such cannot cause problems for the heart, if the T4 and T3 are within the normal range. But they use it as an excuse to lower your medication, sometimes without even testing for T4 and T3. And this can leave you under-medicated, as it seems to be the case with doityourself.
Well, if your T4 was 36 (and the range is usually up to to 22) then of course you were truly over-medicated with T4 and as a result your TSH was suppressed. So in your case, it was the right decision to lower your T4 accordingly.
However, we do see many cases that the TSH is low even though the T4 result is well within the range and of course if you then lower the T4, patients will get symptoms, as it is not based on sound evidence. And again, the TSH will not give you symptoms, but an excess of T4 will. The excess of T4 would have given you a high T3 reading as well, so hight T4 and T3 = high heart rate.
Thanks for reply.Unfortunately my GPS way of organising appointments seems very random. 3 week wait and only a telephone call from a locum is the norm. Currently feeling so poorly I'm not up to doing battle with the receptionists. Their answer, Go to AnE!
You should be able to get online access to your NHS records and test results, this may require you to go to surgery and set this up, (ask what they require eg passport & proof of address, birth certificate- save 2 trips) but once done as long as you don’t forget your login details, it should be only time you need to do this. You then should be able to order prescriptions etc online too if you wanted to. Given many surgeries now prefer paperless, this maybe best way going forward rather than asking for copies and this way you’ll be able to follow anything you go to your surgery or hospital etc (NHS) for. Anything private will only be recorded if the consultant or clinician has sent your GP surgery information, then it will be usually recorded sometimes can be 2wks later.
Once you have the relevant information repost as it will be easier to understand what it is or why GP reduced your meds.
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