Hi all. I posted last week asking for an opinion on which tests I should ask for. I am on T3 only (no supplements) and have been feeling rotten lately. Have tried adjusting dose up and down and on a good day feel like I'm just keeping my head above the water. I can't cope with stress, have terrible mood swings and feel exhausted.
I have just got my results back from my GP in Spain. They don't prescribe T3 here so she didn't understand about expected suppressed TSH. She has referred me to an endo next month. They did general blood tests as well as iron, B12 and menopause which I requested (I'm 43 and nothing has showed up in menopause results). I will only post the results which are out of range or close to it, as well as the B12 and iron which seem fine. I have translated from spanish so hope they make sense.
Any insight very much appreciated
TSH 0.03 (range 0.34-5.60)
Free T4 0.25 (range 0.61-1.12)
Free T3 4.44 (range 2.5 - 3.9)
Mean corpuscular haemoglobin concentration MCHC 35.1 (range 31.5 - 35.00)
Mean platelet volume MPV 6.3 (range 7.4 - 10.4)
Basofil 0.02 (range 0 - 0.2)
Basofil percentage 0.3% (range 0.00 - 1.80%)
Iron 139 (range 40 - 150)
Ferritin 77 (range 15 - 150)
Transferrin 287 (range 200 - 360)
Transferrin saturation 38% (range 16 - 50%)
B12 341 (range 180 - 640)
Thanks again.
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Timeistight
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Hi Why did you go on T3 first and not thyroxine or armour? That really is the crucial question. Also, are you sure the range you have for FT3 and T4 are correct? i have never come across ranges like this and I use 6 different Labs.
Hi Jackie. Thanks very much for replying. I have checked the test results again and I have definitely posted them correctly. I'm not familiar with testing in Spain - maybe that's why they look so different.
I had 2/3rds of my thyroid removed 5 years ago due to a large nodule and was put first on thyroxine which I couldn't tolerate, then armour which was a big improvement but still not brilliant, then T3 only. This was under the advice of a private UK specialist. The T3 really gave me my life back and made a massive difference, but lately I have been feeling really 'thyroidy' and not very well.
Hi again. I see that is different. It is my understanding that what ever happens before ie surgery then that is now irrelevant and that the thyroid ,as it is now, should be treated no differently. Those results certainly do seem odd then..I could not have thyroxine either. I take armour 2 and a half grain and T3 20mcg. That does make my TSH unmeasurable and my FT3 just under the top of range. Not ideal, but how I need it.It depends why you stopped armour but may be a regime like this might help. Other people sometimes post from Spain who also have had problems. However, I have 2 Spanish specialists who are brilliant especially as they listen and treat as asked. Many years ago after a bad accident my son `s life was saved by a Spanish consultant. may be you need to shop around like in the UK, although as you say no T3 is a problem. When I started treatment , many years ago, there was no T3 ,so I had to have a very high dose of Armour, when T3 became available ,I was able to reduce the dose dramatically. I do have a brilliant endo and I know,if people cannot tolerate thyroxine or Armour then she tries them on T3 alone but only then. Have you had another ultra sound? What about Parathyroid? I have a very enlarged thyroid and nodules but too ill for any surgery. We discovered my PTH ( parathyroid) was high as my calcium went out of range, I then had to stop all vit D ( I doubt you need it) and it was still high. The initial test is a blood test AM but must all be done together, vit D, calcium and PTH. If high then a nuclear scan ,CT and ultra sound of PTH and thyroid.
The other thing is as I am sure you know , the thyroid is very much influenced by any other differences in your body or trauma. I do not know if this applies but maybe it is important to make sure it is not the thyroid and not something else. Hormonal problems can be confusing. I know when i developed sever diabetes with not real indications I was in a bad way. I had no markers ie weight etc. May be the endo will help, I do hope so.Make sure you list your worse symptoms. I have also found unwise to mention not sleeping as they all seem to then think Hyper!!
Hi Heloise. Thanks for replying. As far as I'm aware, when taking T3 only, the TSH and free T4 results are suppressed so I guess I have to disregard those results.
Hi Time, I've been reading about T3 only and posted this discussion last week.
This was a comment by a doctor who believes in T3:
Let me also say this about the Bunevicius et al paper in the NEJM on Feb. 11. These 4 workers merely substituted a fixed amount (12.5 mcg) of T3 for 50 mcg of the T4 that 33 patients were taking for their hypothyroidism; they did not, by any means, optimize the FT4 and Ft3 serum levels. And STILL, many of the patients improved when the T3 was substituted. My contention is that they would have improved even much more if their FT4 and FT3 levels had both been optimized.
Sorry, I've added confusion. They usually say it's a conversion problem. It would explain why you don't handle T4 that well. But maybe too much of it is your problem.
I still don't know enough about reverse T3. I understand there should be a 20:1 ratio between the two. (T3 to RT3). I think a test for RT3 could help your analysis.
First it I read that possibly T4 would block T3 for some sort of regulating and escalate the RT3. Then I read that it might be CONSERVING T3 for later use? or some other reason. It may be that no one has quite figured it out. But I haven't read some of the books that have been mentioned so maybe someone else knows more about it.
I don't know if low T4 would precipitate either of the above.
I have been thinking in the night about you. 2 things I did not mention, It is possible to suddenly become allergic to any drug. I did ,a different drug. I had severe auto immune Hepatitis, yellow by then, very poorly , seeing a gastro every week but in the end after 9 months cardiac after an OP discovered it but without even knowing the symptoms. I am told this often happens because not very common.I had to stop the drug immediately. The other thing is, do you think you may have an absorption problem? There is a simple , specific stool test called Faecal Elastase.Treatment is with enzymes for the pancreas about 20 mins before food. I have them on a script but not drugs so safe to take them from health shops etc. My endo told me this.
Hi Jackie. Thanks so much for both your posts. I haven't had an ultrasound since before my op, and no parathyroid checks. I was lucky to have private healthcare through my job at the time (had to leave 2 /12 years ago as I had become too ill), so had the op at a private hospital in Spain.
After the op they told me that because they had left me with a third of my thyroid there was no need for any medication. I had a check up and blood tests with an endo at the hospital a few weeks after op and was told all was fine. I was very naive to all things thyroid then :-), but I became increasingly ill and was then given thyroid tests by a gp who diagnosed post natal depression because the thyroid tests had come back fine. I asked for a copy of these results, and they were actually out of range! Anyway - I saw another gp and was put on thyroxine, but I just continued to deteriorate. I lost a lot of hair, kept falling over, put loads of weight on, couldn't speak properly and could hardly climb the stairs.
Eventually I saw the independent specialist who put me first on adrenal support, then armour, then T3. As I mentioned - the T3 really gave me my life back. Since I started taking it over a year ago my weight has gone back to normal and I have been able to start working again.
I wonder if I do have an absorbtion problem. I have a problem converting T4 to T3, so wonder if this could be related. I have reduced my T3 in the last few days and feel a lot better in many ways - stabbing pains and back ache have reduced and I feel much calmer, but I am exhausted and foggy brained.
I just can't seem to get it right. I have always had to adjust my dose up and down, and often benefit from a day off. I am always a lot worse at this time of year. I was really hoping to have a B12 deficiency or something which sounds terrible - just to get a cause to my problems.
I have wondered about trying to reintroduce T4, and supplementing with B12 and Vit D (although as you say I shouldn't need that here :-)).
My spanish gp has been great, but is leaving everything for the endo app. which is on 5th March - not too long a wait at all.
I wonder if when we're on T3 only our free T3 results should still fall within range.
Thanks for taking the time to post. Much appreciated.
hi Yes, It is my understanding that being just on T3 does mess up the other results. I am wondering what your FT3 results were like before being treated again? Now with T3 some specialists will put patients on T3 without testing. When I was first diagnosed TSH T4 and FT3 were always tested. There was not T3 now. However now I am not 2 and half grains armour ( it was much more) and 20mcg T3, my endo and I like a test for all three every 6 weeks, I have a lot of other medical conditions and, as you know the slightest thing effects the thyroid.If you are paying for the new endo appointment ,it might be worth getting these tested, on line? first to save on money re appointments. If conversion problem T4 to T3, it does not mean no T4 but usually a combination. regarding vit D, ( a hormone) the very cheap test is Ok, same as NHS here, not brilliant. If low you need a calcium test ( corrected calcium ) before treatment.Don`t forget no good having a PTH test without a calcium and D AM at the same time.If you cannot get the test for absorption it is safe to try the enzymes as they are not drugs. I am very against anything over the counter but in this case it is safe. You could also be anaemic after the OP. goes with thyroid. B12 or Ferritin. B12 is autoimmune. Sounds to me like auto immune thyroid , Hashmitoso ( dyslexic , cannot spell it!_) ,any definitely autoimmune. All the autoimmune diseases go together.The enzyme is not really pancretitis ( which I also have ) but enzyme production ( autoimmune).B12 has a lot of symptoms but like most other things, Even the test is not fool proof and if low in range, should be treated ( some luck!_). As you know it takes a year to be stable after a thyroid OP, but has always been "normal" to be hypo after wards.
Well, good luck with it all. Send me a PM ( lick on picture)when you have seen the endo.At least you are making "them" listen! Essential!
Hi Jackie. Thanks! The endo appointment is through the NHS here, but I think I will start looking into what private blood tests I can find in case I need them.
I think my other options are to look into trying out the enzymes you mention, possibly T4, B12, Vit D and maybe calcium - all in a very controlled way.
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