I would be really grateful for some advice, I'm struggling to walk, stand and function every day.
I've suffered with extreme fatigue, heavy lead like legs, cant stand for long, walking is difficult, balance very poor. When I shut my eyes I nearly fall over. Palor, extreme stomach swelling, tinitus, confusion plus sudden onset of overwhelming confusion at times, breathless, poor memory, nausea, no appetite, insomnia plus many more symptoms.
To through in the mix, I had to seek private help from Dr Skinner who prescribed me levothyroxine as said I had Hashimotos, after 6 weeks on medication, the improvement was incredible, however, the above symptoms also appeared.
I started to self inject every other day within the last 12 months, noticed an improvement ( stopped about 4 months ago, for financial reasons) and now feel at my worst again.
I have been battling with my gp, to give me the injections on the NHS, who told me it was my age (by the way, Im only 47)
I explained to the gp that I had self medicated and the results were amazing, even able to walk, fatigue improved and could return to work. but since not being able to afford it, I'm back to square one. He tested my B12 levels after 3 mnths without and my levels were 2000.
Since that appointment 2 months ago, Ive deteriorated, and at my wits end to know how I tackle this. Im a single parent with 3 independent children, does anyone have any advice how I communicate with my gp, who's not willing to listen.
Please excuse my spelling, this took me an hour to write
Thanks
Claire
Written by
csavery
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Ask for a ferritin test, a full blood count, and a thyroid panel. Your GP will probably only test TSH on thyroid, private tests are available for c 100 if you can afford this, probably you can't. She will prob agree to the ferritin and fbc .. if you have results already, please post. Do you have a previous test result for thyroid antibodies?
Thank you for your reply, I had the thyroid antibody test along time ago (negative), Dr S was happy to diagnose me back then but all NHS gps, are only looking at my blood results. Ididnt mention thison my first post but I have been to see private gp for thyroid as havnt been able to afford to see him for 3 months, I am a mess.
I suppose the only thing to do is, take the Levo again, see what happens.
My instinct as someone who does not even possess a white coat is that if you don't have thyroid antibodies it is more likely to be B12 def which is at the root of yr problem, esp if there was an improvement when you were self injecting.
In the UK the NHS cannot afford to run speculative blood tests, or very wide panels. Usually a gp will order a TSH test, sometimes a free T4 test too. If these show clear problems under their guidelines they may order an antibody test.
A consultant endocrinologist will order a wider panel, but few get that far.
However, it is possible for people who feel they may have autoimmune thyroiditis, but have a TSH below NHS current ranges for diagnosis, to get a wide private test, including antibodies, FT3 and a selection of nutrient levels. This may tell them that they are developing AIT, or show a deficiency at T3 level.
I did this, having self diagnosed from symptoms and nodule. The gp told me I did not have Hashis, on the TSH test, but when I privately tested my antibodies were high, and I kept privately testing until my Tsh was over threshold. Looking back, I would now have advised myself to self treat at that point.
It is best not to supplement b12 until you have had the tests for antibodies to intrinsic factor, mma etc because supplements skew the results of some of the tests.
I am assuming you are from the UK? In theUnited States anything below 200 in the B12 range is bad mine is 105. But it's supposed to be between 400 and 900. In Japan they don't let it drop below 550 in order to stay healthy. Are your measurements different in the UK? Because if mine was 2000 I would be Super Woman. I would seek out a specialist if you can. The Specialists have helped me more than anything. I know that it's not as easy in the UK to get to see a doctor as it is in the United States. We have very close friends over in England. Although that doesn't mean much in the United States when you don't get the proper help. All I know is if I am not getting a caring person that is trying to help me get over this then I find someone who does. And I don't care if the primary doctor likes it or not. And then I read read read and try anything and everything naturally because if anything works it's better than nothing. Let me know how you are doing and if you can get any other help besides a primary doctor. I was a single mother of 3 boys years ago so I can understand that. My heart goes out to you!
Sorry but I forgot to mention that I am on Synthroid. That is the name brand for levothyroxine. Mine was removed years ago. My surgeon told me never to go on the generics and I understand why. My big thing with all these pills is the fillers. The fillers are what give a lot of reactions. They may say they are the same as name brand but they're not. My cardiologists and gastrinologist are both working on getting me name brand medications. Insurance companies try to fight it but hopefully I will be able to get what I need. I'm sure the thyroid has a lot to do with everything. Because it controls all the hormones in your body. In my family of seven children and my mother and father, my two sisters, myself my mother and my brother all had to have our thyroid removed except my brother had radiation treatment. So I understand that point also
Am interested to know why your thyroid surgeon told you never to go on the generics drugs. Have been on levothyroxine since 1979, and I live in the UK. What is Synthroid based on? is it pig thyroid product?
I have no idea if it's a pig product. Somehow I do not believe so. But all name brand do not have the filters that the generics do. Generics can be very sensitive and some people. I know, like my sister were on the generic Synthroid like you are and still was not feeling well and thyroid wouldn't stay regulated. When she changed to the name brand she felt better and her thyroid levels have now been fine. I know some people using the generic ever have a problem but then again they dont know any different because they never were on the name brandbut it's worth a try to be on the name brand. It's more pure it doesn't have any of the added chemicals which are the fillers. I had mine removed almost 40 years ago. And never used the generics and never ever had a problem with my thyroid never. Where is the people I know who've been on the generic like you have and my sister was always had a problem. That's all I can tell you. I may add that my surgeon back then was the top surgeon in the United States. Not that I was rich and had the money for that he just happened to be the top surgeon and I happened to get him. He was even on TV about being on the name brand and not the generic. It's worked for me
Synthroid is simply the USA levothyroxine product with the highest marketing budget. And which is able to push their product more strongly than any other company.
It is not a desiccated porcine product.
Some in the USA far prefer other makes - such as Unithroid (also sold as Lannett).
Consistency is often more inportant that actual make. That is, not changing makes from one prescription to the next.
For clarity, Unithroid is a "named brand" and Lannett is a "generic". They are the exact same tablets coming out of the same factory.
Thank for comment helvela. But do you live in UK? And why would you choose Unithroid/Lannett replacement therapy?Do you happen to know if there is a similar product in UK?
I would choose that out of the USA products because I have read of quite a number of people who found it the best of the USA levothyroxine tablet products - and I'd follow their reported experiences as a first go.
There are four UK products - Teva, Actavis, Wockhardt and MercuryPharma (both as generic levothyroxine and as branded Eltroxin - they are identical). None is the same as any USA product.
Everyone is different. I am taking 100 micrograms of Actavis plus 12 micrograms Uni-Pharma.
Thank you so very much for your information. May I ask whereabouts you live in the UK (county would be helpful if you do not wish to divulge town/village, etc.). I live in North West Leicestershre. Am taking 100 mcg of Actavis on alternative days and 75 mcg of Mercury-Pharma on other days. So it seems we're taking the same products, or is Uni-Pharma superior to Mercury-Pharma? You seem to be very knowledgeable about thyroxine products. Also am a little surprised that your dose is so finely tuned (12 mcg) how was this possible?
I was taking 100 / 125 alternating days. I tried mixtures of Actavis and Mercury Pharma - sometimes one, sometimes the other, alternating days, etc. Nothing was quite right.
I managed to find some 12 microgram Uni-Pharma and tried my current Actavis plus Uni-Pharma and feel definitely better.
With Mercury Pharma I felt over-dosed. With Actavis I felt under-dosed. On current regime, I mostly feel right.
Thanks, however did you GP help you in this process? One can't just decide to change doses just like that with thyroxine. So how did you come up with 12 mcg Uni-Pharma?
No GP input. However recently changed GP and explained - she was perfectly happy.
Simple - I saw some Uni-Pharma 12 microgram, and bought them out of interest. Left them in a cupboard for ages - then thought I'd try. There is nothing magic about them but, at least in combination with Actavis, they seem to do what I need.
Next prescription time, I shall ask for 12.5 microgram Teva as my top-up.
I was never comfortable on alternate-day dosing, though many are perfectly happy.
My GP prescribed 25, 50, 75 then 100. I had to ask each time. They didn't ask me "How are you feeling? Your tests indicate a need for an increase, should we do that now?"
The adjustments were always to an exact number of available tablets. Never something more considered and less of a jump.
I got hit by the under-delivering Teva levothyroxine which put me back probably several months.
I knew I needed more (my blood test indicated that I was was definitley not over-medicated) and tried 125, 100/125 alternate days, 100 with the odd day on 125, all were not completely successful.
That was when I decided to try a finer adjustment - of 12 micrograms - by buying some of my own from abroad. And I feel that was successful. As there was not such product in the UK, my doctor could not have prescribed it. (Well, it would have been next to impossible.)
So at my next GP visit, as it happens, to a new GP, I explained. And she was happy.
Do bear in mind that anyone can choose to reduce their dose at any time. It is only an increase that really can be a problem.
Our doctors should be our partners, advisers, not dictators. (Well do I know this ideal isn't always achieved.) If I went and changed my dose to 300 micrograms, I'd expect something rather less than complimentary next time I see my GP!
In some countries levothyroxine is an over-the-counter medicine. Often I wonder whether those countries have any more problems because of that than we do because of it being prescription-only? I'd be very interested in properly conducted research into that question.
But generics have the main ingredient plus fillers. Name brands do not. Thus generics are less expensive because rhey have fillers. There is a difference. Name brands cost more because they don't have the filters. If you don't have a sensitive system that reacts to fillers you're probably fine with the generics but if you're fighting an autoimmune disease and have other sensitivities the name brands may work better for you.
All tablets, generic and branded, have fillers. Fillers are essential in distributing the active ingredient evenly throughout the tablet and formulating the tablet. Different fillers are used in different generic and branded tablets and that may be why some tablets are better tolerated than others.
Again, just keep trying to find the doctor and the medicine that works for you. Sometimes it is difficult saying I give up on you as my doctor but then when you get the right doctors and they work with you to find what works for you, it will mentally make you feel better which gives you hope. When you feel sick and hopeless and finally find who and what helps, it is all worth it.
Every make of levothyroxine that declares, say, 50 micrograms potency should have between 95 and 105% of that claim (that is USA standards, UK is 90 to 105%).
They can't just throw in sugar, starch, cellulose or anything else instead of active ingredient.
The FDA does check. The MHRA does check. In fact, one UK make got thrown off the market despite having the right amount - simply because it failed to deliver that dose to the people taking it.
Have a read of actual ingredients in ALL USA leovthyroxine products (and much else) here:
Thank you Jackiekay. You were obviously at the right place at the right time. lucky you and very glad for you. I fear it will be more difficult if nigh impossible to get that here in UK, perhaps only privately. Will explore. than again and take care.
Keep trying to find the one that works for you. Whatever that may be. It is so hard.not feeling "normal" and so sad that our medical world has become insensitive but there are good doctors out there, just need to find the one who cares enough about you and is willing to go the extra mile. if it feels wrong, move on to what and who feels right. Its so worrh it! Take care!
Sorry to hear about your problems. Dealing with an uninformed GP in the NHS is a nightmare and most people would probably recommend changing doctors. But not always possible...
With regard to the thyroid, you may be a bad converter from T4 to T3 and, despite being on levo, you will still have thyroid symptoms. Register on the thyroid section on this forum to read more about that.
With B12 a definite factor but with continued defiency symptoms, see if your GP will test for homocysteine and MMA (methylmalonic acid). Elevated levels of either or both indicate that you are not processing B12 adequately and high levels in the blood of B12 are no indication of proper absorption and use by the body (see below).
If your GP won't order the tests on the NHS, try Biolab:
A 'deficiency' of B12 (irrespective of blood levels) can be caused by not having the optimal levels of certain chemicals which allow the body to process and use the B12. These chemicals are produced by the body and reduced production levels of the chemicals is determined by your genes. This is where homocysteine and MMA come in. (PS - Apologies if this sounds simplistic but I'm trying to make this relatively easy to understand given your difficulties.)
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