Hi, I am a male that has had a lot of the symptoms described in this forum. For almost a year I have been struggling with extreme fatigue, weakness and shakiness, headaches, heartburn, nausea, etc. I went from being an extreme athlete to a complete couch potato because I cannot find the energy to lift my arms some days. Doctors have told me it is in my head even though I have tested 5.5 for TSH (0.32-5.04
mU/L) and 328 (<35
IU/mL)Thyroperoxidase Ab. I was on synthroid for only a couple of weeks, and retested at 4.8 TSH, then was stopped by the doctors and since have been put on lexapro. From what I've been reading here, I should not have stopped but continued for a few more weeks. I would appreciate your opinion as I have had little to no improvements for almost a year.
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spencerguenther
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Looks like you understand that simply getting TSH into the reference range is grossly inadequate.
Only someone who really doesn't understand would see your TSH go from out of range, to only just in range, and stop levothyroxine.
First, blood test results take weeks to stabilise after a dose change (or introduction of levothyroxine). Typically, six weeks is regarded as reasonable.
Second, most people find that they need to see their TSH drop to 1.0 or below to feel well. If TSH has dropped a bit, but not yet even near 1.0, then increment the dose and test again in six weeks. Typically, doses are increased by 25 micrograms at a time.
Third, just what is Escitalopram, an SSRI, supposed to do to help?
Having high Thyroid Peroxidase antibodies is a strong indication that you have Hashimoto's thyroiditis - an autoimmune disorder which slowly destroys your thyroid.
It is quite common for people to manage until they hit their limit. What seems to happen is that your body tries desperately to maintain T3 levels. It can do that for a long time, but once it can no longer do so, there can be a sudden deterioration.
Thank you for your reply. I agree that the Escitalopram is not the right path to take. My gp prescribed it for me after I would continue to return with my symptoms and he would continue to say "I don't know what to do". I didn't take it for months because I didn't want to become reliant on it if I didn't need it but became desperate as I travel a lot for work and can barely sit through a meeting. It seems to help a little bit with the heavy heart beating and anxiety but I have only slept 4 hours a night for the past 2 weeks and can only assume this is the cause.
I just started taking Levo again after reading some of these posts, starting at 50mcg. I will push my gp to keep testing TSH to see if it improves.
Before my own diagnosis - which was, like you, just out of range for TSH - I was going to bed, often sleeping for an hour (or thereabouts), waking up and being unable to get back to sleep for the rest of the night.
As soon as I started levothyroxine my sleep improved. Now, I very rarely wake during the night, if I do, I'll fall back to sleep quite quickly.
Anxiety is definitely common when hypothyroid.
Heart issues such as palpitations are also common. Unfortunately, it appears that too many doctors think they only occur when hyperthyroid or over-medicated. That simply is not the case and some find they ONLY occur when hypothyroid.
TSH isn't the right test - though GPs almost always do only TSH. It would be sensible to have Free T4 and Free T3 tests - but best of luck getting them done through a GP!
I just replied with this message below but thought I would share here as well:
Thanks for the info! I have had vitamins tested and they are all good with the exception of calcium which is 2.64 (2.10-2.60). T4 free is 11.6 (10.6-19.7) T3 free is 5.57 (2.6-5.8). I've been tested for H Pylori and various other things. I have an abnormal amount of Blastocystis parasites which I was hoping was the cause but are notoriously difficult to get rid of. I've been taking natural remedies from my natruopath to treat it but my condition has not really improved.
As you can see, I've been trying hard to figure this out for a while...
This is my first post but I scan all the time as I wish I could figure out why my body has changed to the point I feel old and weak
This gives me lots more hope!
I've been feeling really unwell for 2.5 years, started with heart palpitations and night sweats, waking with pins and needles in legs or arms or numb.
Chronic fatigue 20 years ago, had to stop Triathlons. Had been a very fit lady until past 5 years.
Last 8 years stomach issues... High levels of Blastocystis.
2.5 yrs ago Hysterectomy
and pelvic reconstruction. Many of the current Symptoms all started post this surgery. From research I feel I may have had thyroid storm? Developed Tachycardia in hospital, in bed with heart going from 60 to 160 while lying there. Insomnia. Patches of no sleep for 2 nights in row, felt like adrenaline pumping. If did fall asleep would instantly wake with a dizzy jolt.
Now my main symptoms are are very off putting shake or dull tremor through body, especially in bed, or when I wake, feel weak, soreness in spine, sometimes night sweats, cant tolerate alcohol, have gone gluten free, constipation, low libido, feel like I cant tolerate exercise!! Very dry skin and eczema around and under eyes, patches of eczema on sides of ribs.
I hate taking medication, whenever I explained the internal shake in my body and heart issues with racing heart, doctor would say Anxiety. I resisted taking Lexapro until I got very unwell. Most likely anxiety due to feeling so unwell and not knowing why? My GP has me on Lexapro for Anxiety, and now that my bone density scan came back as osteopenia - he has me on Hormone Replacement. I am sleeping better however rest of symptoms havent changed
? If I dont sleep well the shakes are bad.
Found a blood test and TSH was 0.55. I am thinking of just getting full blood test privately for thyroid. I dont want to take lexapro or HR!
Trying to organise full tests - Ive noted all the items required for testing off other posts, Im in Australia and have a doctor who is very headstrong and insists Anxiety/menopause. I know it is not, Ive just had best 3 days, relaxing with kids, jigsaws at home, no stresses and symptoms remain same.
Grew up swimming, water skiing and triathlon in rivers and lakes. Got sick with Chronic Fatigue after 3 years of this, have never had the same energy or health since. 3 other women in my Triathlon training group also developed fatigue and gluten issues.
That is interesting... I also am a waterskier and spend a large part of my summers in the lake. I always just assumed it could be from travelling but that is also a possibility.
High antibodies confirms autoimmune thyroid disease (Hashimoto’s)
Standard starter dose of levothyroxine is 50mcg. This should be taken EVERYDAY, bloods retested 6-8 weeks After each dose increase
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
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 as you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
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)
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
There are numerous causes or triggers for Hashimoto’s
Thanks for the info! I have had vitamins tested and they are all good with the exception of calcium which is 2.64 (2.10-2.60). T4 free is 11.6 (10.6-19.7) T3 free is 5.57 (2.6-5.8). I've been tested for H Pylori and various other things. I have an abnormal amount of Blastocystis parasites which I was hoping was the cause but are notoriously difficult to get rid of. I've been taking natural remedies from my natruopath to treat it but my condition has not really improved.
Thank you. That sure is a long list of symptoms, I now feel very confident that this is what I need to treat. My gp and internist both suggested that I had too many symptoms for it to be anything real. I will be looking for a new doctor...
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.
This is a brilliant list and makes some sense of my current symptoms which include a lot of the Nose Mouth and Throat stuff. Thanks for posting the link.
A year or so before experiencing severe hypo symptoms with a TSH of 104, I was diagnosed as mildly hypo. Like your provider, my doctor pet me on 50 mcg of levithyroxin. Ultimately, it made me feel ill and my next round of bloodwork was in the normal range. I had no real understanding of the impact of thyroid function loss. I thought I would have to watch my weight.
After experiencing the full failure, Even though I began taking 120+mcg daily and levels normalized, my health was changed forever.
I developed severe migraines, sleep disorder, hypertension,hyperlipidemia (eventually fatty liver disease), musculoskeletal pain/fibromyalgia, uncontrollable fatigue, memory loss, difficulty concentrating, menstrual issues along with increased moodiness, depression and anxiety.
In addition
It is about 20-25 years since this began. Since I never felt rested, I “made” myself begin to exercise. I increased it over time and incorporated it into a routine. I was able to stop taking an antidepressant, Cynbalta, daily NSAIDS and another pain medication with the addition of a probiotic, multi vitamin, Vitamin D, Vitamin B, B 12, and potassium. Thyroid drives the bus for a lot of neurotransmitters. Good luck!
I have to admit. Ive been on Levo for over 2 years with Hypo was very fit now 2 stone heavier a very fast heart rate much of the time, also headaches along with chronic fatigue and if im lucky 4-5 hours sleep a night. Cannot exercise like i used to as my heart rate goes way too high
May i suggest you change your Dr ref your diagnosis as some if not most just dont understand people with thyroid issues and how debilitating it can be.
Good luck hope you gwt it sorted and fast keep at them its your body abd your health
There are lots of possible reasons for fast heart rate (tachycardia).
Personal anecdote : My own fast heart rate is caused by me going on the occasional sugar binge. I'm not diabetic (yet). Also, low iron and/or ferritin can cause heart rate to rise. It can also cause chest pain if iron gets extremely low.
For other people, heart rate can be affected by low vitamin B12, low folate, Free T3 which is too low or too high, levels of sodium and/or potassium which are too high or too low, and low magnesium can affect heart rhythm.
I'm sure there must be other reasons but those I've mentioned are the ones I'm most familiar with.
I’m not as familiar with British testing numbers but it looks like you’re hypothyroid. My TSH was up to 16 when my symptoms got bad (the higher the TSH the More under active or hypothyroid you are). I would look into going back on a combo of synthroid and cytomel or the natural thyroid medicine and see if that helps? I’m still trying to find answers myself
I was on levothyroxine and it just about killed me even though it put my numbers in the range the doctors were looking for. I had all the symptoms you are describing. I could barely get out of bed or up out of a chair. I also had extreme brain fog. I switched to Armour thyroid and the difference was night and day within 3 days. I felt like myself again for the first time in 2 years. I had to push and be adamant about switching. I told my doctor I was NOT going to take levothyroxine anymore. Read this article:
My medicine just increased to 75mg and I feel better than I have felt in 3 years. Armour is so much better than levothyroxine, for me anyway!! Give it a try!!
Looking at getting some now, both my GP and Endo are on vacation for 2 weeks... I halved my Synthroid and the headaches have dissipated. Like you say, TSH in range with that stuff but symptoms all still present. Hope Armour does the trick, thanks for the tip.
I am up to 88mcg and feeling terrible. Intense headaches where my head is burning is the new normal, ice packs are the only thing that gives me relief. I recently injured my back and was having a lot of pain for the last 3 mo, scans were backlogged so I went for a private MRI. I got the full body scan because of all my issues, expensive but hard to put a price on your health. This was the report for the thyroid:
Mildly prominent with a small cystic focus on the right mid lobe too small to characterize maximum dimension 3.5 mm. There is generalized restricted diffusion of the thyroid. No regional adenopathy.
I am unsure as to the significance of this, could this be causing my problems or is this common?
I have been on thyroxine for over 3 years getting worst, recently found out that we would never get better with those medication, this kind of illness need to treat from the roots..
Im on stricly diet protocol and getting nature treatment,
Feeling much better.. weaning off medication .. and will get out of all useless endo doc soon, we should have to find our own ways to be better and to be well
Thanks for the info. Yeah I tried naturopath first and she put me in the thyroid direction. She has a strong feeling that it is my Blasto parasite that is causing the Hashis. I wasn't sure and still am not, but after many rounds of antibiotics and natural treatment, I still have the parasite and I still have Hashis while the thyroid treatment is falling flat. Going to have to attack this thing from multiple sides i think
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Levothyroxine and headaches
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