Help on T3 mono, 1st blood results: I have been... - Thyroid UK

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Help on T3 mono, 1st blood results

Pascha1 profile image
15 Replies

I have been on T3 mono about 12 weeks now which I slowly built up to 50mcgs T3and these were the 1st bloods, they took temp BP and pulse at same time bloods were taken, which to me they dont really add up.

I had sub thyroidectomy years ago so looks like I still have some thyroid left looking at T4

I started off feeling great but the last two weeks became extremely tired and getting hot, having to sit down on dog walk, I see I am over medicated and do feel like I was hyperthyroid with the tiredness and sitting down all the time but with out fast heart beat.

I have stopped the T3 for a few days as was so tired, and kept getting hot flushes Im starting to feel better but on 25ncgs cytomel usa and scared to add more incase i get extremely tired again, but feel a little chilly today but weather isnt so good today

, this T3 isnt going to be easy by the looks of it so any help on what I should do as Endo appointment is not for about 6 weeks so left in dark a bit here on it all

the bloods were done in the afternoon 2pm

Serum TSH level

0.004 miu/ range 0.35 - 4.94 Abnormal (

My TSH has been 0.004 for a few years now and was like it when I was on T4 mono and never moved since and no Doctor or Endo seems bothered about it ?

Serum free T4 level

5.4 pmol/L range 9 - 19 Abnormal

Serum free T3 level

8.4 pmol/L range 2.9 - 4.9 Abnormal

Systolic blood pressure

104 mmH

Diastolic blood pressure

70 mmHg

O/E - pulse rate

74 beats/min

O/E - tympanic temperature

37.1 degrees C

a while back I had a cortisol Synacthen test

results for that were

Baseline serum cortisol 127

30 mins 527 range was 430 so passed that

60 mins was 499 not sure what that meant it going down

I was told by endo all was ok even though baseline cortisol was very low, They never checked ACTH as said stimmed well

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Pascha1
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shaws profile image
shawsAdministrator

The following from above:-

"Serum free T4 level 5.4 pmol/L range 9 - 19 Abnormal

Serum free T3 level 8.4 pmol/L range 2.9 - 4.9 Abnormal

Blood tests were introduced along with levothyroxine alone. Before levo was introduced we were given NDT (natural dessicated thyroid hormones) - no blood tests and all emphasis was on small increases of NDT taking note of relief of clinical symptoms. When resolved we were on an optimum dose.

T3 alone means you will have no supplement of T4 in your blood therefore, T3 and T4 will show 'abnormal i.e. T3 high and T4 low.

We recover by very small increases of NDT or T3 and concentrating on relief of clinical symptoms.

Pascha1 profile image
Pascha1 in reply to shaws

Thank you

So I should start again and wait bit longer in between raising T3 again , I dont take much notice of my TSH as has been like that even when on T4 mono,

I was wondering with my BP and pulse being low it didnt all match up to how I was feeling, or do you think maybe the low cortisol could be making that low ?

should I just take T3 in one go early morning or split it throughout the day, the Endo didnt really tell me much just to add slowly and said I could have up to 50mcgs so was left in the dark a bit on it all :(

shaws profile image
shawsAdministrator in reply to Pascha1

I take my T3 in one daily dose. It makes life much easier. I take mine when I get up with one full glass of water and then wait an hour before eating. I have no symptoms and feel well.

I don't know much about cortisol and a member who does will respond.

There's good information on the following link. It is my one of Thyroiduk's Advisers (now deceased).

naturalthyroidsolutions.com...

Pascha1 profile image
Pascha1 in reply to shaws

Thank you much apprieciated :) how long did you leave when 1st starting t3 to add more and did you have bloods taken with each rise in T3, not that they mean anything but maybe some use for future to aim for..

I feel if they had removed all my thyroid I maybe easier to get meds right :( but they never which I think is going to cause me problems with dosing as think it randomly works then doesnt work.... I dont fancy another thyroidectomy though so guess i will have to suffer this problem.... thank you

shaws profile image
shawsAdministrator in reply to Pascha1

An Endo added some T3 to T4. I then I dropped T4 and increased slightly the T3. Its quite some time ago now so cannot remember accurately. I shall give you a link which might be helpful.

naturalthyroidsolutions.com...

Usually when we take, say 100mcg of levo that is equal to around 25mcg of T3. You can split T3 with a small cutter: some members use a sharp knife. You can add every few weeks a 1/4 tablet always taking note of symptoms and heart rate. If too fast pulse, go back to previous dose.

Pascha1 profile image
Pascha1 in reply to shaws

Thank you for link.......

See my pulse and BP dont match over medication but did have hyper symptoms, ( I rememebr that feeling well from being Hyper but I had fast heart bea and bad palpitations back then t.. but Medication isnt a real thyroid so is confusing, but I will find a sweet spot one day trial and error :) I hope*

shaws profile image
shawsAdministrator in reply to Pascha1

even adjust by 1/4 tablet at a time and give yourself about a week to see if you can stabilise the dose. Keep in mind I'm not medically qualified. I had awful palps when on levothyroxine and even the cardiologist was puzzled - couldn't figure it out no matter how many halters or phone calls during the night and was thinking of putting an implant in my heart to 'see' what was going on. Once on T3 I never consulted with him again.

Nanaedake profile image
Nanaedake in reply to Pascha1

I remember saying to the doctor, could they do a total thyroidectomy because I couldn't seem to find a dose that worked. So your comments reminded me of how bad I felt. Eventually after a couple of years of taking a range of vitamins, checking blood results and dropping my levo dose. Letting TSH get into normal range and cutting out all other medicine, sticking to Actavis (which suits me) , I slowly improved. I couldn't go down the T3 route as I couldn't afford it and it's not available locally. I hope you get back to feeling well again soon. If you have not yet optimised all your vitamin and mineral levels I would certainly look into it.

Pascha1 profile image
Pascha1 in reply to Nanaedake

Thank you, Vitamins been good for over year now, done that route, even on B12 injections weekly as well now, . My Tshs just wont budge have reduced to lower maounts been very hypo doing it but couldnt stay awake so had to take meds, I think TSH has packed up tbh. was like that on levo and T4 and T3 well within range, I only once on levo went wbout 2 points too high on T4 but t3 was mid range, . so I doubt my Tsh will ever come down... The Drs are not at all concerned about it, I was given T3 added with it like that NDT with T3 and now T3 mono, thank god they are not TSH obsessed.... Very lucky I get prescribed my T3 on NHS but had to pay for own NDT which I didnt do that well on..so got T3 mono as Levo made me very unwell all brands so levo isnt an option for me, I have genetic faults , and probably more they havent discovered, that and Thyroid hormone resistant genes. so I think its all a bit complex :(

Nanaedake profile image
Nanaedake in reply to Pascha1

Yes, sounds complex and I'm glad your vitamins are fine. Are you taking any other medicines because I discovered some symptoms were due to side effects of prescribed medicines which I've discontinued. I a l so think I had low calcium that did not show up in blood tests but possibly resulted in osteoporosis due to bones being robbed for calcium. Vitamin D and magnesium alone did not correct the deficiency for me. I think a partial thyroidectomy coupled with menopause may possibly precipitate low calcium absorption but I'm not a doctor. My experience is that my symptoms began to really clear with the addition of calcium. I do take K2-MK7 to help prevent stiffening of arteries. I don't think calcium defficiency, unless extreme, always shows up in blood tests due to the compensatory mechanism of 'borrowing' calcium from bones to maintain homeostasis, or balance. Calcium is the most abundant mineral in the body but if lacking causes side effects and I think they can vary in individual people. Tingling in lips and extremities may not be the main symptom if the body is compensating?

We may also lack calcitonin due to loss of thyroid tissue so perhaps need more dietary calcium to compensate?

I'm not advocating calcium supplements as I don't know enough about it but it's definitely something to discuss with your doctor.

I have been prescribed calcium with vitamin D due to my osteoporosis and I've read that calcium citrate is better absorbed that calcium carbonate. You could also ask for a DEXA scan to get a baseline for bone density and monitor changes.

Pascha1 profile image
Pascha1 in reply to Nanaedake

Thank you for answering me :) Nanaedake

Sounds like your parathyroids may have been damaged if you had calcium deficiency thats a sign they may have been damaged have they ever checked yours since having thyroidectomy ?

I am on Adcal D which is Vit d and calcium which I have been on years, I got prescribed it after telling Dr I had tried my mums and nails improved on it . I also top up Vit D3 and K2 , my Vit D levels are very good and Calcium are mid range, which I have Vid D and calcium checked often,, I also had sub thyroidectomy years ago but Parathyroids were checked when I had op and My GP just recently checked them as said these are often damaged in Thyroidectomy which was weird as no one else after op had thought to test them ( A professor did my op so I think he was probably a safer option than a trainee doing them ( My mum was a nurse at hospital and said he was the only one she trusted to do thyroidectomy which glad off as some trainee killed someone the day before my op doing thyroidectomy so Parathyroid are ok

I have recently had MRI scan as my back was bad a trapped nerve .but since having B12 shots every other week my back has improved and am pain free now// My B12 levels looked good but My GP said all B12 blood tests were flawed so let me have a trial of B12 shots , it cured quite a few of problems

My GP is a rare and good one, He said that my low Cortisol may stop the Thyroid meds working, which was probably caused by me not getting treated for years and then badly treated and under dosed on T4 that has caused it.. but when I had Synacthen cortisol test done for adrenal insufficiency after having quite a few low and below range 8am cortisol test done the Endo said I was fine but he never tested for secondary AI or tested ATCH which I will have to have tested again at some point I think GP is going to do it if he is allowed the drug used to do it, if not I will get Endo to further investigate it all

GP gave me a trial of hydrocortisone but I am allergic to it , its another prodrug and have not found an active one in uk as yet,

I was hoping that T3 mono may heal my adrenals .

checked BP seeing nurse today and was a bit low 106/66

so I am going to ask for another Am Cortisol test see how thats doing. it could be that why Im not feeling that great at moment, I get dizzy when stand up..

its hard trying to feel well again but I at least have a decent GP now who I trust more than all the others Ive seen in my life and hes supportive in T3 mono he also understands genetics which I have many genetic faults in Thyroid and other parts of me,,

I take selenium( the active type ) which I think helped way back, methylfolate, and methylB complex but take a break of them every now and then, I have magnesium spray, Adcal D 400 x 2 per day. I do take sleeping tablets but have been on them years they are an active drug and out my system quite quickly , I take Paracetomel occasionally but not often , B12 shots every other week and thats about all I take these days, I used to be on a carrier bag of meds till I had T3 added... I take my vitamins well away from my T3 so that shouldn't affect them...

I have recently stopped HRT patch and had coil removed as was put on it 15 yeras to late and didnt feel it was doing anything.

Are you on T3 mono ? I have only been on it about 12 weeks and think the Cytomel GP prescribed may be stronger than the brand I was on before as was over medicated, so maybe trial and error on getting levels right...

I hvve recently had minor surgery maybe the after affects of anesthetic are making me feel crap and had a course of strong antibiotics.

Thank you again for advice most apprieciated xx

If you can think anything else please any advice ,it may help and be something I haven't tried..x

Nanaedake profile image
Nanaedake in reply to Pascha1

Yes, I lost some parathyroid glands during surgery. I don't know how many I've got left but should have half of them. I don't know much about cortisol, it sounds complicated. I think good folate, B vitamins, zinc and other essential minerals all help though.

Pascha1 profile image
Pascha1 in reply to Nanaedake

Sorry to hear they damaged them did they tell you straight away they had damaged the parathyroids or did you find out later on down the line? I want to get my Zinc and copper tested before supplementing them, I take a little bit now and then but scared I over do them, I think Ive read if you take zinc you should also take copper to balance it out. x

Nanaedake profile image
Nanaedake in reply to Pascha1

No, I found out later. I got numbness around fingers and mouth bu nobody suggested checking vitamin D or taking calcium supplements to see if it helped.

I'm not sure if hypothyroid people need to take copper or not. You might get enough from your diet, just read up on it.

Sometimes strong antibiotics can upset the bladder so be vigilant to rule out a urinary tract infection if you experience discomfort.

Pascha1 profile image
Pascha1 in reply to Nanaedake

Thats a bit naughty of them they should of checked it after the Thyroidectomy I remember when had my thyroidectomy the professor coming down ordering they check calcium levels several times a day and every day for about a week, I think they kept people in longer back then.. 35 years ago...

I dont even know if I had Vid d deficiency 15 years ago, I had tried my mums Adcal D and felt better so asked for it and Dr just said yes without testing me They probably wont stop that as got calcium in it and have lost all my notes so no way they can check why I took it...

Thank you I will keep my eye out for any signs or symptoms on that one hopefully wont get that but good to know to be aware of it :) ..

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