I have been underactive since Aug 2020. Levo increased gradually in 25mgs to present 100mg daily. Having bad side effects ie stomach cramps,constipation. Switched from Teva 8 weeks ago to Activis as couldn't cope. Cramps gone. But in last 3 weeks been having night sweats, nausea , fatigued. Coincidence was when I had 1st covid. Last week GP said other patients had similar but should settle. Mine hadn't. Anyone else experienced this?Dr refuses to do T3 or vits so I asked nurse to draw extra blood for me to send off for private test.
Test results (Done 9am 24 hrs since last meds)fasting test. Always take levo early morning ie 4am on bathroom break!!
I had CT scan in Feb (every 6 months) since 2018 as had nephrectomy for tumour but no chemo. Adrenalectomy (one July 2018) non cancer.CT results on chest and abdomen last week all clear. So never been on meds. I am really struggling with Hypo though and would appreciate your advice to where I go from here.
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rick2525
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I cannot comment on the vits except to say low vit d gave me night sweats and got me diagnosed in the first place... I can’t see a vit d number, so that may be worth exploring in the future. Actually, looking at the ranges, I think you mean vit D where you wrote vit B? That could be the culprit re night sweats as it is barely scraping into range...
For the appointment with the doctor, in my utterly inexpert view, you have plenty of space to try a 25 mcg increase in levo to see if that helps? It might help raise the fT3 and fT4, which could have you feeling a bit better.
Yes. Your correct. The vitamin D test was 50.5 (not Vit B!!!!) Interesting what you say re Vit D and night sweats. Did your GP diagnose this or endo? They tend to think its stress related. Did it work?I will ask my GP this question on Monday. I think I will have a battle to get an increase in levo on Monday as GP was already making noises about been overmedicated last time. Will do battle.
Hi - it was diagnosed hypo by an endo who looks after a different condition. I’d mentioned the night sweats and said I thought it was my age and she disagreed and said it could be vitamin d deficiency and that there must be a reason for it and tested my TSH - 28! And vit d was just under range. Taking vit d did stop it, too!
Like many/most with Hashimoto’s you have poor conversion of Ft4 to Ft3
Under medicated and likely to addition of small doses of T3 prescribed alongside levothyroxine
Vitamins need to be OPTIMAL first
What vitamin supplements are you currently taking
Vitamin D is far too low at 50nmol
Aiming to improve to at least around 80nmol and around 100nmol maybe better
Folate and B12 on low side too
Are you currently taking any B vitamins
As you have Hashimoto’s have you had coeliac blood test done
And are you on strictly gluten free diet
So as you only have one adrenal gland have you had saliva cortisol and DHEA test via Regenerus
Or any nhs medic retested cortisol levels
Email Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3
NHS and Private
tukadmin@thyroiduk.org
Roughly where in the U.K. are you
The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is always under 2
When adequately treated, TSH will often be well under one.
Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
Will Endo prescribe T3 if Drs wont. ? GPs dont even want to measure T3 it seems. Baffles me. I am not on any Vit supplement. I asked GP for test but was told NHS dont do it.
Cortisol reading 375 within range. Coeliac test came back negative (was still on gluten )I have since been on gluten reduced for 3 weeks but only by own decision. I feel this has made a difference. I am so desperate for help can travel to Endo in
York, Harrogate, or Leeds
Original message correction should be Vit D 50.5 NOT B
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Thankyou so much for your info. I am a 61 year old Male weight 15st 4lb. GP's seem to be concerned only TSH and target below 2. They frighten me with oh you dont want to go overmedicated. I am not hanging my hat on tomorrows appointment. Do you know any decent Endo's in my area. I will contact you directly if need be. I have never had vit supplements before. Any idea what dosage I need to get to optimal? Whose best to help me with this. My aim is to control hypo. Not hypo control me. Your advices appreciated.
Just to update on Drs appt yesterday. GP refused to increase dosage of Levo. Because my TSH is "normal range " and increase would cause me to be overmedicated. So I pointed out that the objective should be based on my symptoms and not to just tick a box of being in range. Wouldn't budge. Did recommend for me to increase Vit D and Vit B. Also if no improvement after then will refer me to Endo. Very hard work to get referred it seems. Hey. This is my life and my symptoms. Why are we made to feel almost nuisance value. I will not give in. I even rang an Endo rec by person from Thyroid UK and could have appt 16th April. But need drs referral. I despair!! Dr. Wait and let things settle on current 100mcg. I got more help from pharmacist who also advised me night sweats being reported to him by others who have had covid jab and can take up to 6 weeks to disappear. Only another 3 weeks to go. Take care everyone.
GP can’t refuse to write letter of referral for private consultation
Bloods should be retested 6-8 weeks after any change in dose or brand of levothyroxine
How long have you been on 100mcg
Meanwhile working on improving low vitamin levels
Plus get coeliac blood test done
Then trial absolutely strictly gluten free diet
We need all our ducks in row first ....before considering adding T3
Likely to need further increase in levothyroxine after next test..before T3
So FULL thyroid and vitamin testing after minimum 8 weeks on 100mcg levothyroxine .....at that point likely to need to see endocrinologist ....especially if GP won’t increase levothyroxine dose further
Make sure you only get same brand levothyroxine at each prescription. If/when increase to 125mcg....will need prescription for 50mcg tablets and cut in half as Accord/Activis don’t make 25mcg tablets
I have spoken with Endo secretary and could see me privately 16th April earliest. I have completed 8 weeks on 100 mcg today 9th March. Last test Tues 2nd . Results posted previously. I have had a coeliac test already which came back negative. Since test 8 weeks ago have been gluten free (almost)and this has made some improvement to digestion and functions. I believe it takes some time to get out of the system. I may have mentioned before I switched brand from Teva to Accord 8 weeks ago also as the Teva was killing me with stomach cramps. When I was on 75mcg I switched from Teva to Accord1 full tablet and a half tablet and within a week the difference was evident. Then I went onto 100mcg accord. When i request my tablets i put footnote in capital letters NOT TEVA. Thankyou once again for helping me.
To push for dose increase guidelines on dose levothyroxine by weight
Even if we frequently 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 eventually on, or near 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.
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B is another option that contain folate, but is large capsule
IMPORTANT If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
With B12 result below 500, recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
You said this was a typo and should be vitamin D. You can edit your own posts to correct mistakes. Click on "More" just below your post, then click on Edit, make your changes, then click on "Post".
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