Ive been on levothyroxine T4 since I was 15. Im 56 menopause at 48. Presenting at GPs since age 36 claiming that I have hypo symptoms despite being on meds. So in 2016 the Endo acknowledges that she knows what T3 is and suggests I try it but I have to source it. After playing around with the T4 dose and T3 dose they were not happy that the TSH was suppressed. I felt good the whole time and they didnt seem to care about that. So I have gone back to my T4 dose of 100 mcg and Ive been on that since late 2019. Now I have thinning hair, palpitations, aching joints every day, blurred vision, sinus infection for 18 months, rapid aging and now Im exhausted everyday and having to go to bed for naps. Last week I had bloods done and the t4 and t3 were in normal range but the tsh was low. What is going on? What do I do now? we have had family trauma and I have been very stressed also.
T4 14.97 (10.30-25.74 T3 3.62 (2.16-6.47) TSH 0.091 (0.39-6.16)
The bloods over the years always seem to be in range but Endocrinologists want the TSH to be higher. They dont seem interested in me telling them I feel fine. Well now I dont feel fine. Any help gratefully accepted.
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sheleen
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So in 2016 the Endo acknowledges that she knows what T3 is and suggests I try it but I have to source it.
This makes me really mad! If an endo thinks you may benefit from T3, why not prescribe it?
After playing around with the T4 dose and T3 dose they were not happy that the TSH was suppressed.
This does too. Any doctor happy to suggest taking T3 really ought to know that taking it will lower, even suppress TSH.
I felt good the whole time and they didnt seem to care about that.
Unfortunately, doctors don't seem to care about how we feel, they only care about numbers. My GP is the same.
So I have gone back to my T4 dose of 100 mcg and Ive been on that since late 2019. Now I have thinning hair, palpitations, aching joints every day, blurred vision, sinus infection for 18 months, rapid aging and now Im exhausted everyday and having to go to bed for naps.
Have you had nutrients tested - Vit D, 12, Folate and Ferritin. Some of those symptoms could be caused by low nutrient levels, and we need optimal nutrient levels for thyroid hormone to work properly.
Last week I had bloods done and the t4 and t3 were in normal range but the tsh was low. What is going on? What do I do now? we have had family trauma and I have been very stressed also.
T4 14.97 (10.30-25.74 T3 3.62 (2.16-6.47) TSH 0.091 (0.39-6.16)
You are undermedicated to have FT4 only 30.25% through range and FT3 at 33.87% through range. Surprisingly they are well balanced. The aim of a treated hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges if that is where you feel well.
Endocrinologists want the TSH to be higher.
I had one of those. Insisted in bringing my suppressed TSH back into range. He lowered my Levo dose and lowered it and eventually achieved his aim. The only trouble was that my FT4 ended up very low in range and my FT3 was 2.8 with a range of 2.8-7.1. Yes, my TSH was in range but in doing so he had made me so extremely ill that I had to give up working in my own business and my husband had to look after me for 2 years. I binned the endo (with the approval of my GP). The NHS didn't fix me, I fixed myself.
Welcome to the forum. I'm sorry you have been mucked about so much. Your endo really should know that taking lio results in a suppressed TSH - it's just what happens.
Your latest results show free T4 only 30.2% through range and free T3 at 33.9% - so they're balanced but both too low. You are likely to feel better if you can get both into the top third of the reference range - or even higher. 100 mcg is not a high dose. Can you get an increase in levo of 25 mcg a day, and re-test after 6 - 8 weeks?
Do you have an early morning, fasting blood draw with a 24 hours gap from taking your previous dose of levo? That gives the highest possible TSH and a good representative level of medication.
You should also take your levo on an empty stomach, just with water, a good hour before other drink and food or two hours after eating to get the most from it - and ideally test your key nutrients - ferritin, folate, vit D and B12 - as your levo works best when these are good. I've managed to get my GP to test them by saying these are the tests recommended by Thyroid UK - but many many people here have to test them privately - you will see lots of posts about private blood tests here.
When taking almost any dose of T3 it’s almost inevitable that TSH will be suppressed
How much T3 were you taking?
When T3 is stopped vitamin levels frequently crash right down..
Joint pain - low vitamin D
Hairloss - low ferritin
Do you always get same brand of levothyroxine?
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
Is the cause of your hypothyroidism due to autoimmune thyroid disease
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)
(If/when also on T3, make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
So you appear to be a good converter, but not on high enough dose levothyroxine
Ask GP for 25mcg dose increase in levothyroxine
guidelines on dose levothyroxine by weight may help persuade GP to increase dose (depending how much you weigh)
Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.
RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
These findings show that lactose intolerance significantly increased the need for oral T4 in hypothyroid patients.
Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3 and consider other issues like lactose intolerance and need for lactose free levothyroxine (often liquid levothyroxine works better)
Come back with new post once you get vitamin results
I avoid dairy milk switched to plant based some time ago getting more religious with cheese as well this year. I havent looked for lactose free thyroxine yet but I'm interested in finding some. Early sept I was 65 kg and taking 100 mcg. But since feeling exhausted I've gained weight and out of breath. I was at the low end of 10 stone in the summer. Yesterday 10 7.
T4 . t3 i got 25mg tabs from turkey. Experimented with different doses. 75 t4 and 12.5 t3. 50 t4 and 6 t3. Basically I halved t3 then tried quarter. All different doses. They didnt care about how I was was feeling only the tsh was their concern. I never lost any weight but had more energy.
Yes 100 mcg levothyroxine but I had been taking biotin as suggested by homeopath for the thinning hair previously random days when I remembered. It encouraged new dark hair growth. But not very much. I'm white haired as cant be bothered to dye it. Also was taking cbd for fibromyalgia cervical spondylosis and other aches. So frustrating to have pain everyday. I started taking my meds at night for many years.
I'm on a break at the moment in Bulgaria and local doc said to reduce t4 for a week and I can try something that works for other thyroid patients. She couldnt translate what it was. I was to order it from Romania. It is called liti in english. I have no idea what it is I couldn't stop laughing that she didnt know what it was and told me to try it. I'm wondering if it is their version of t3. Seeing as she said reduce t4 for a week. However, I was falling asleep as it is so dont think I can last a week on 50 mcg. I'm back to 100 taking some multi vit and calcium. Will get all the other vitamins and liquid dose to try . I will go the lab and get all bits tested. In recent years I've had low calcium and zinc. I thought I had gout as well. It is neverending.
I’ve been on Levo since 21 now 69 and only felt goo the past few years after taking responsibility for my health. With advice from here I raised vit d and b vitamins and also started having private blood tests yearly to make sure I have the full picture as doctors rely on tsh so much. What I found from the blood tests was that my conversion t4to t3 improved dramatically with vit supplements. I no longer visit gp for my thyroid and if I am summond I take to much evidence with me that the doctors leave me alone.
It is good to read all the positive feedback on here thanks. Great to know I'm not alone. I've been stuck several times I think it is too much depending on what's happening in your life at the time. Brain fog moments on top of that as well. I'm already on a multivitamin and d3 from last week. So just got to check everything on a regular basis. I dont know why I bother with the endo as not helped at all. Forums are the most helpful of all
Suggest you stop multivitamins and get FULL thyroid and vitamin testing a week later
Come back with new post once you get results
ALWAYS test vitamin levels before starting any supplements
Retest at least annually “
Thousands on here only improve thyroid health by getting full testing privately.
I haven’t had NHS test in 7 years. GP very happy to accept copies of FULL private test results at annual review
Come back with new post once you get vitamin results
Remember to always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before
Only test after minimum of 6-8 weeks on constant unchanging dose and unchanging brand of levothyroxine
Only do private testing early Monday or Tuesday morning and post back via tracked 24 hour postal service
Ok will stop the vits and get tested. I feel like I'm a nuisance asking my gp to get sorted they always refer my to the consultant. I sent them an online consult yesterday and the reply was wait till you are back here. Well I'm trying to have a break (carers burnout) and dont want to rush back as my mental health has been tested with family drama.
Complicated! I used to test all the thyroid hormones in a hospital lab.
As you know TSH is produced to make more thyroxine, if it is low. It’s what’s known as a feedback mechanism.
Your TSH is very low so should be producing more T4. TSH is produced by the pituitary. I’m not a doctor but I was hyperthyroid initially, but gave me too much radioactive iodine which turned me hypothyroidism. I’m on 150 micrograms a day.
I would have your pituitary checked out.
The feedback mechanism is not working.
Your symptoms are of chronic hypothyroidism. Could get a second opinion?
Sheleen, Lots to great advice given already that I could not add to. I am fortunate that I am on Levothyroxine without any problems as far as my thyroid is concerned and on a constant dose of 75 mg. Good luck
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