Having managed to get to 62.5 mcg's of Levo I tried to raise to 75 mcgs and was hit with a psychosis again ( suicidal incapacitation, inability to speak or form words...truly terrifying)
My gp has now lowered my LEVO to 25mcgs and introduced liothyronine Sodium at 5mcgs once a day. He wants to see me again next week.
He's very old fashioned and thinks what I am putting up with is dreadful. He said in the old days we didn't rely on blood tests we medicated our patients until they felt well!!!
Hallelujah!!
My latest bloods on 62.5 mcgs Levo only are
TSH 4.65 high. ( 0.27-4.2)
FT4. 15.9. (12-22)
FT3. 4.7. (3.1-6.8)
Right now I feel nauseas- aching all over body like flu - muscle stiffness in arms, shoulders and neck - burning feet -headache - insomnia -dizzy - swollen, burning tongue
Joesmum, your GP's as rare as hen's teeth. He sounds wonderful. I hope the T3 helps you. I had to stop T4 for 3 months and take T3 only until the T4 had completely washed out. I had adverse effects within hours of restarting T4 but adding T3 calmed them.
Abolutely nothing like yours, Joesmum. When I added T3 cognitive function, clarity and mood improved within days but physical symptoms (there were many) didn't improve at all which is why I decided to clear the T4 build up.
Ok ......so this is going to be interesting.
Once you'd been on T3 for 3 months could you then add in a bit of T4 without the adverse symptoms re appearing?
Could it be that it's because 62.5mcg of Levo is enough to switch off the feedback response - so you're existing on tiddly amounts of hormone instead of what you'd normally make yourself (a slightly higher amount I'm guessing)? So raising your dose of Levo actually makes you more hypo in your case. I don't know, just speculating. But if that is the case, t3 should help, so long as you're on enough of it - which you won't be for a while, by the look of it.
5mcg is a very conservative dose - but I can see why he's starting there. I'm just hoping he won't leave you there.
Yes I think it's entirely possible that 62.5mcgs is switching off the feedback loop. Maybe if I just bumped to 100mcgs I would feel better but I am too frightened to find out. I would be prepared to do it in a controlled environment ie hospital, but not at home on my own. Too scary.
I hadn't had any improvement stopping T4 for 8 weeks so I also stopped T3 for 4 weeks. Might have spared myself a very hypo period if I'd continued T3 only another few weeks but no meds cleared everything. Within a week adverse symptoms were improving and by the 2nd week most had completely cleared.
I went back on 100mcg T4 and by the end of the day was having palpitations and breathlessness. Next day the same, but they calmed down when I added 20mcg T3. Fine now taking 100mcg T4 + 20mcg T3 morning and 10mcg T3 at night.
That's wonderful. Sounds as though you cracked it and thank god you did.
I am constantly astounded by the number of people who suffer. We are so invisible. It's as though the medical profession are trying to 'bury bad news'. Somewhere along the way I'm sure they know that they got T4 wrong but rectifying the situation would be so costly and controversial.
It is awful, the symptoms, you've been having. I am glad GP has added T3 and treats his patient and not the blood test. You might be o.k. on T3 alone and it's good he has introduced it slowly because of your other symptoms. Some people cannot take levothyroxine as it may not be synergistic with your body. I was more unwell on levo but am fine on T3 only. I hope your GP increases T3 increases and reduces levo on a trial basis to see if it makes you much better and also reduce your TSH at the same time. If your doctor is talking about how he was trained, it was probably NDT which was prescribed too as that was the only one available.
Nature-Throid is also hypoallergenic if you still have problems with T3 which I hope you don't.
5mcg T3 is equal 'in effect' to 20mcg of levo.
I hope you find a solution and you feel better soon.
Hi Joesmum, I don't have any advice for you but just want to send my sympathies. In a strange way I am glad to see your symptoms (not glad that you are having them of course) but because I have had dreadful cognitive symptoms on levo also but practically everyone says that levo couldnt have caused them. (One consultant did agree that he has had patients with similar problems and he believes it is the levo but unfortunately he wasnt an endo!). I wouldn't describe it as psychosis though - I have complete insight into the dreadful things I am experiencing. I too had the inability to speak, form words, difficulty understanding what was going on around me, inability to add simple sums, difficulty putting on gloves etc etc! Been referred to so many different 'ologists' but I'm convinced it is the levo. Of course endo says that is impossible!! I know its not. Coming off levo now after almost a year of hell and I can feel 'my' brain coming back and felt like I had been 'locked-in'. I wasn't able to write much before or understand much so very hard to do any research. I have been trying to compose some posts here to ask for advice but so far not able to do it, but felt I wanted to reply to you right now as I have some idea of the hell you have been through. Forgive me in advance if you reply to me and I take ages to reply back.... I hope you get sorted out.
When you had the 'psychosis' did you lose touch with reality or did you know what was going on? Because if you knew what was going on I suggest you don't call it psychosis within earshot of any medical professionals - what we are going through is bad enough without getting another label - and one that is incorrect and unhelpful for you. Good luck!
Evo1, Are you taking T3 or NDT instead of Levothyroxine?
My endo also told me my adverse symptoms couldn't possibly be due to Levothyroxine. I had been recovering on T3 prior to radioactive iodine ablatement but felt poisoned when I was switched to T4. I was over replaced and for a long time thought that was why I felt so bad but the symptoms were worsening even though T4 dosed was titrated from 200mcg to 100mcg. I proved to myself that T4 was the problem by stopping it on two occasions with symptoms clearing and being able to gain a little weight. I'm now able to tolerate T4 taken with T3.
No Clutter I am only on levothyroxine. Hoping to compose a message tomorrow or the next day with all the details asking for advice but cant think right now.
Evo, I'll look out for it. Say what dose you were taking and how long you've stopped taking it. It would be helpful if you include your last thyroid results too.
This is exactly what I am going through and cannot understand why I was so good on Goldshield Eltroxin up until May 2010 when it was changed to Mercury Pharma Levo. I am really beginning to think it is not the excipients, as some think, but the main ingredient - Levothyroxine Sodium. For the last 10 days I have lowered the Levo to 50mcg and added in 1/2 grain Nature Throid x twice daily, but to no avail. Do wish you good luck on your journey joesmum.
'I have read that the main ingredient in 'levothyroxine' is orthomollecular and assume that 'liothyronine' is also so it has to be the 'others' i.e. fillers/binders. I, too found, a big different with Eltroxin and other levo - none could compare with Eltroxin so I am sure MP when they insist Eltroxin is identical is not quite truthful. This is from Dr Lowe:
"Thyroxine is what we call an "orthomolecular" substance. This means that thyroxine is natural to the human body and necessary for health. Allergic reactions to orthomolecular substances are incompatible with health and extremely rare."
(so my assumption is that liothyronine is also orthomolecular) as it is the Active hormone. When I began to get symptoms on a T3 I changed to another and haven't looked back since. So I believe it is fillers/binders which cause some problems.
I note what you say about reducing levo and adding Nature-throid. I only got better when I stopped levo and took either NDT or T3 only.
Thanks for your answer Shaws. Guess this must be the case and am improving on the changeover from Levo to Nature Throid. Think this will be a long slow job though, but must keep striving for better health.
Many of the symptoms you've mentioned are linked to low B12 and, as autoimmune thyroid disease and B12 deficiency are often interlinked, with overlapping symptoms, I wondered if this had been tested?
Thank you all so much for your replies. It's very comforting to know that there are friends out there.
I have a theory about all this.
My TSH has never risen above 6.2 despite FT4 and FT3 being below range?
This would suggest some form of central hypothyroidism either pituitary or hypothalamus?
When I raise levo I plummet into suicidal depression/ inability to form words within 1/2 to 1 hr lasting for about one hour sometimes 2 hrs.?
I wonder if my pituitary is SO sensitive that it literally shuts down as soon as it senses levo in my system. I do not have an adenoma. My pituitary has been scanned and it is just an odd shape; slightly enlarged.
My endo once suggested that it might be a dopamine issue.?
I don't think its the fillers/ binders because it happens with every generic I take. Once I have got used to the dosage these horrific side effects go until it's time to raise again when it happens again.
I wonder if this is a transient form of myxoedema madness. I know it's rare but I can't be the only one.?
Anyhow.....I thank you all for you our wisdom, insight and support. X
So glad you posted this joesmum. It mirrors what I am going through and I have been so grateful that you have put all this into words and given a few explanations of what could be the problem. I would say that it could be a transient form of myxoedema madness, you certainly don't feel in control of your feelings and are powerless to do anything about it. We really do need help from the medical profession that does not seem to be there these days. All information we can give each other is good and helps us on our own journey to better health. Can only say that at the present time I am improving a bit by making the changeover to NDT. Certainly feel calmer and wish you better health.
My doctors would have put me in a Psychiatric Hospital. Not one of those 5 Endo's would have recognized Mental Issues/"Myxedema Maddness" [please google that term!] symptoms as a Hypo/Hashi's symptom, not one. That being said..i wonder if you would do best off levo all together. I wonder if you are converting properly.
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