Hi Sorry for the Long post if anyone can stick with it then I thank them.
I have Panhypopituitarism following a prolactinoma and then radium implant in 1973. As a consequence I am on replacement meds:- hydrocortisone,desmopressin (for diabetes insipidus) levothyroxine and norditropin (GH replacement) I have also been on B12 injections for pernicous anemia since 2003. Despite all of the above the thing I find the hardest to deal with is the dose of thyroid medication prescribed.
tsh will always say 0.01 due to no signal from my dormant pituitary gland
t4 never says what the medics want usually around 22 !! can be higher
t3 low to mid 3-5
currently on Levothyroxine 100/125 mcg per day
I was initially placed on 200mcg a day then down to 150mcg, some years later it was deemed too high a dose so the long " Battle " began! I had built up a career and was enjoying life until the docs decided to constantly lower my dose of levo. I lost my job the income and my life that went with it and for the first time in my life I was put on antidepressants! I was devastated. I spent many years in the abyss until I was placed on 100/125mcg e.o.d and managed to struggle in order to cope with a four hour, four days afternoon shifts on a switchboard.
What I find so hard to deal with is that at no time have I shown any symtoms of over treatment however, whenever my dose is lowered I have a huge list of symptoms!! the Endos seem unwilling to take on board! As this has gone on for so many years I can go into meltdown and not even be able to discuss the topic without anger/tears.
Now I am retired I am once again battling over my dose as I think I should be able to live the last part of my life My Way!!
What seems so wrong ( and is backed up by comments on this site ) is that so many people are affected not so much by the malfunction of their Thyroid gland but, due to the dosage of medication prescribed. It seems Gps are more likely to be on our side ( perhaps because they see the results when we're in their surgery ) but, the Enos seem to be totally lead by the BLOOD Test!!
Is there anyone out there with a similar situation? and what is your experience please...
Written by
shirleyh14
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Can you include the lab ref ranges for FT4 and FT3? Ranges are the figures in brackets after results.
What T4 are your doctors aiming for? Some people need T4 over range to deliver reasonable FT3. FT3 5.0 may be adequate but 3.0 is usually below range.
Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your GP.
Many members give up with their doctors messing their dose about and self medicate. If you felt better on a higher dose you might want to consider buying your own and self medicating.
It's also worth asking your GP to check ferritin, vitamin D, B12 and folate as deficient levels are common in hypothyroid patients and deficiency symptoms can be very similar to hypothyroid symptoms.
I am currently waiting latest blood test results however, any past tests show that I am in the upper or, sometimes even outside lab ranges! the latter is usually due to me taking levo on the day of blood test!
Unfortunately, these blood tests don't always reflect how well I am feeling! so to me they have ltd use. I'm convinced that I probably don't convert t4 to t3 effectively. Some endos accept that my readings will always be on the high side due to secondary hypothyroid situation But, they still keep me on a dose I can only just manage on.
I have drawn endos attention to the fact that my blood results can sometimes be lower when on a higher dose! and vice versa and they just say that it is only a test in time! and yet that is exactly what they will change my dose on !! never works to my benefit.
Q has anyone else experienced blood test results being high on low dose and vice versa?
Due to the constant battling over the years the medics even start to make me doubt my claim, then an event will take place on a daily basis and I remember that i'm living this life and I have got it right. Family and friends watch on in disbelief.
As for self medicating I seriously considered this in the past ( my husband would get some for me in a flash ) but, i'm a concerned about doing that. Firstly, where would you buy safe levothyroxine, secondly what about the blood test results when doing this? also if your'e not well what position would you be in and would they want to treat you? I can't see promoting good doctor patient relations. But, totally understand why anyone would do this.
Note. I have only ever been on thyroxine/levothyroxine and never offered anything else!
As for B12 etc I do have B12 injections every 8 weeks and have a Full blood counts yearly.
After having managed my situation for 45 years i'm absolutely sure what medication is doing what in relation to how I feel. I have said as much at my last ( feb 18 ) apt and am currently waiting with " hope " for their positive response. Even then I will be in fear of the " all important? " blood test results and what they would bring. It's exhausting...
We always recommend on this forum that testing should be done in the following way :
1) Book blood test appointments for as early in the morning as possible, and by 9am at the very latest.
2) Take last dose of Levo 24 hours before blood test.
3) Take last dose of T3 12 hours before blood test.
4) Take last dose of NDT 12 hours before blood test.
5) Note that some people object furiously to the above.
6) Whatever times you end up testing, stick to that timetable in future so that you can realistically compare results.
7) Stop eating and drinking 10 - 12 hours before blood test. Drinking water is fine and is to be encouraged.
8) After blood has been taken take any missing doses of Levo. Whether you take your missing doses of T3/NDT is up to you. Bear in mind that higher than normal doses of T3/NDT taken all at once may give some people temporary symptoms (e.g. fast heart rate, sweating) from extra T3, so you might just decide to leave the doses out.
I have only ever been prescribed levothyroxine for secondary hypothyroidism
I don't know about T3/NDT what are they?
I usually leave levo off ,as you say, for 24 hours and have blood taken mid morning very often at my hospital apt. Although I have recently requested that I have bloods taken locally and take the results to the hospital with me . Makes for a more meaningful discussion.
T3 and NDT (Natural Dessicated Thyroid) are alternatives to Levothyroxine that the NHS generally won't prescribe. People who use them in the UK usually have to buy their own online.
Levothyroxine has to be converted in the body to T3. Many people have no problem with this, whereas others are very poor converters. The poor converters often need T3 in tablet form to make up for what they can't create in the body.
Levothyroxine is what is called a prohormone. It has few known uses in the body, other than being the raw material for creating another hormone - in this case T3. The active thyroid hormone - the one that makes people feel well in the right quantities - is T3. Every cell in the body needs T3 to make them function properly.
NDT is a very old treatment. It was first developed in 1892 and was the first effective treatment for hypothyroidism. Before the development of NDT sufferers eventually ended up mad and in asylums with untreated hypothyroidism. NDT was the only (or the main) treatment right up until roughly the 1970s, then Levo took over. But many patients still prefer NDT. It is made by several different companies - you may have read about Armour Thyroid, which is an NDT product - but there are quite a few other brands available. The active ingredient in NDT is made from animal thyroid glands which are dried then crushed, mixed with other ingredients, then turned into pills. The animals usually used are pigs, but cows are also used.
Taking Levothyroxine before your blood test might make T4 peak in the blood and FT4 may be a little higher than normal but it won't affect TSH or FT3.
If you post your recent TSH, FT4 and FT3 results and ranges I can tell you whether you are adequately dosed, whether you are a good or poor converter and whether it might be helpful to add T3 to Levothyroxine.
If you decide to self medicate you will need to order private thyroid tests to guide your dosing and members can advise where you can purchase Levothyroxine or T3 without prescription. Blood tests can be ordered via thyroiduk.org.uk/tuk/testin...
I had bloods taken in january and apparently something happened ( either at phlebotomy or, the lab ) so all results were contaminated! so I had more taken at hosp apt in feb and am waiting the results. Will send them over when received.
My TSH is always 0.01 due to my defunct pituitary gland so that's never helpful in comparing the balance to T4/ T3 My pituitary is not sending any signals to my thyroid which I feel may makes assessing my levels a bit more complex.
I'm not always sent the ranges fron the hospital! only t3 t4 readings. As I understand it the ranges vary throughout the country! not quite sure why?
When I have bloods done with Gp the lab don't even run t3! which is really unhelpful.
Hi, I pretty much know what the ranges cover so don't always ask for them and the endos do say where abouts in the range my levels are. The problem is convincing them that whatever the Blood test says does not mean I feel the same as the test say I should!
If I fall in the lower level they say " that's where they like me to be "
If I fall in the middle they say " all satisfactory "
If I fall in the upper range they start to try and lower my dose but, now I put up a strong protest to not go any lower than my current dose. And round we go!
With regards to t3 my Gp tells me she asks lab for t3 but, only gets tsh and t4!
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