I have been unwell for over a year after discovering thyroid nodules which have now become diffuse. My Tsh is High and my T4 low and they have given me a starting dose of 25mg Levo. One of the worst symptoms for me has been an absolute inability to tolerate heat and I'm booking all of the time, but I thought that was a Hyper symptom. I have low folate too but get really sick when I take the 5mg pill they gave me.
can anyone advise me at all
Thank you so much
Feeling hot is not the same as being hot. (WIse words from a well known endo) Have you taken your actial temperature?
50mcg is the usual starting dose of levothyroxine unless you have a heaet condition or are elderly.
Usually it take 6-8 weeks for the body to full adjust to each increase in levothyroxine. The nhs retests at 3months.
You can feel worse before feeling better. On such a low dose this might well be the case.
Do you have your last thyroid blood test results.
Commonly people can be low in B12, folate, ferritin and vit D. Worth asking your doctor to check these. Then post your results.
Always ask for copies of all blood test results. You are entitled to them.
Thanks so much for the reply, I haven't yet started the Levo, my heat is definitely "felt" not an actual temperature, I'm hot even when everyone is cold and have been for the last year, it's really awful. My body temperature is actually low I just feel so hot, but thought it was a hyper symptom and not a hypo.
My results are :
TSH 9.3
T4 12.5
Folic acid : 5.9
Iron/ Vit D and B12 in normal range
Yes I was like that. I felt hot but my actual body temperature was lower than normal. This is classic hypothyroidism. It's a sensation.
With the correct dose of thyroid hormone replacement this should settle.
I can't thank you enough, I have been going out of mind for a year , not even wanting to go out because I was so hot and just wanted to rip my clothes off 🤣
It's such a comfort to find someone who can relate to that.
Well I did also have times when I felt frozen and had piles of clothes on in the middle of hot weather. It's a lovely group on here you eill fibd others who totally get it!!
A good book to read is Livibg with your Thyroid by Barry Durrant Peatfield. Knowledge is power so understanding your condition will help you to take charge with your treatment with your GP.
'an absolute inability to tolerate heat ' 'but I thought that was a Hyper symptom'
The problem is that your body doesn't have sufficient thyroid hormone to enable it to control your body temperature in response to the environmental temperature.
'I have low folate too but get really sick when I take the 5mg pill they gave me.'
That's probably for a couple of reasons. Firstly, that is far too high a dose (400mcg would be more approrpiate). Secondly, with insufficient thyroid hormone, your digestive system is unable to process the nutrients properly.
Your high TSH, low T4 can impact temperature regulation so your heat tolerance may be down to this, however Hashimoto’s thyroiditis is a possibility as to why heat is causing you problems. With your next bloods test for T4, TSH worth asking for a TPO antibody test as well. Stepping up slowly on the Levothyroxine after each 6week bloods is probably the right approach, it just takes time to find the right balance. In my case I was eventually on 100 after 3-months.
Iron/ Vit D and B12 in normal range
Please add actual results and ranges
Have you had thyroid antibodies tested to see if cause of your hypothyroidism is autoimmune
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
How old are you?
Female?
Standard STARTER dose levothyroxine is 50mcg
See how you get on with 25mcg, starting on such low dose can make you feel more hypo
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
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)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Post all about what time of day to test
healthunlocked.com/thyroidu...
Testing options and includes money off codes for private testing
Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins
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Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins
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Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/testing/thyro...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/signs-and-sym...
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Randox
FULL thyroid test including both thyroid antibodies just £29
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From hypo to hyper but still hypo symptoms.... What to check next?
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