I've been struggling with various symptoms for the past 3 or 4 years and diagnosed with Hashimotos and primary hyperparathryoidism, both ignored by GP and endo. I seem to feel worse every day and do suffer with a lot of pain from T5 compression fracture due to osteoporosis. I have been gluten free for 2.5 years and almost dairy free and no soya.
I haven't done any testing for around 18 months but decided to do a test last week. The reason being that I decided to start self medicating on 6.25mcg of T3 a day. I did this for four weeks and didn't feel any better, if anything more anxious as I don't really know what I am doing. Anyway I have left it off now for over a week.
My B12 has always been high end normal but is over this time because I took the advice in an article by Isobella Wenz and purchased some Pure Encapsulations - Homocysteine Factors which I had been taking for around 6 weeks but have left them off now.
SilverAvocado
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elaine2447
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Hi Elain2447, I'm just about to get some food, so will come back later and write you a proper post. I did have one question, tho. I don't quite understand what you're saying about trying T3.
Were you taking any other thyroid hormone before you started the self medicated T3 (ie, are you prescribed Levothyroxine or similar), and what are the details of that?
Were you on any thyroid hormone when you had the older blood test?
When did you start taking the T3 and what was the dose?
Were you still taking it when you took these new blood tests?
Had you been taking the same dose for 6 weeks when you had your recent test?
Are you taking any vitamin supplements?
This will help me interpret what you've got here I'll get back to you later.
Hi, no I've never been prescribed anything as I said Hashimotos and thyroid ignored apart from yearly antibodies by GP. As long as everything "within the normal range" (their range) they don't bother.
The only reason I started the T3 was encouraged by a friend who said it turned her life around and she wS unable to tolerate T4.
I was only taking the T3 for 4 weeks and I left it off a couple of days before last test and haven't continued with it since. I got a bit chicken about taking it without supervision.
I take vit D on and off because that can upset the parathyroid problem. I take vitamin c with ferrous fumerate, a combined vit k 1, 2 mk4 and mk 7, magnesium glycinate, bamboo silica which has small amount of selenium and biotin (which I left off for a couple of days prior to test) boron and the Homocysteine had betaine, folate, vit b6 and b12 (the latter of which was too much) so I've left that off. I drink fortified non dairy milk but have to be careful all the time of my calcium intake because of parathyroid which in itself is stressful because I have severe osteoporosis.
Unfortunately because you weren't on a stable dose for 6 weeks, and had chopped and changed just a few days before, the new thyroid panel won't be completely accurate. But I don't think that matters too much in this case, because both sets of tests are quite similar.
Both tests confirm the diagnosis of Hashimotos, with raised TPO antibodies. Unfortunately only some people are lucky enough to get reduced antibodies when gluten free In fact the numbers who need to be gluten free is something like 80%, so if you don't get bad symptoms when you're accidentally glutened, you could try introducing some, and if you don't feel sick you could start eating it again. A smaller percentage of Hashi's sufferers get similar benefit from being dairy free, so it's worth trying that completely just to see.
Your 2017 TSH is over range, so it's even more stingy that your doctor isn't willing to treat I also think that as you've been confirmed to have Hashi's, and have symptoms, you've got a good case to be treated. I'm not too knowledgeable about this, but others on the forum can quote the guidelines and have ideas about how to put pressure on your doctor, so definitely see if there's more that can be done.
In your 2019 test the TSH is slightly lower, but I think this is one thing we can't rely on, because TSH can be quite slow moving in comparison to the two frees, and it may not have recovered over the days you were off T3. Its certainly in the same ballpark.
Its a shame the test wasn't done with no hormone at all, because then we could have known if your thyroid has got any worse in the 16 months. If you've got copies of the results from your GP you may be able to figure this out. We're entitled to copies of these results so it's worth going in and trying to see your records.
You don't need me to tell you both these are pretty high TSHs, and a person with a healthy thyroid would never have them anything like this high. My personal cut off is about 2.5.
Both the freeT4s are very close, about a quarter up the range, which is low. A healthy person would have a number close to the middle. Your freeT3s are also quite similar, about a third up the range, and again, a healthy person would be close to the centre.
I don't know as much about vitamins, but the one that jumps out at me is vitamin D a little on the low side.
In terms of advice you were talking about trying the T3 and ending up feeling speeded up and possibly overmedicated?
You've got two broad options. One is to keep working to try and get a diagnosis, which I think may still be worth it, because you've got ticks in a lot of boxes. It can sometimes be a matter of visiting as many different doctors as you can. Maybe writing to your MP, that kind of thing.
There's a lot of security in being treated by a doctor thru the NHS, because you get all that legitimacy, as well as someone else making the decisions so you dont have to read up and research yourself.
The other set of options is to try self medicating. One thing I might suggest is to try Levothyroxine instead of T3. This is what your doctor would prescribe, and its less likely to cause the racing feeling. Some people still get it, but it is much more associated with T3. In general its a bit easier to dose and doctors will tend to understand it.
The racing is probably caused by adrenal problems. Having been ill for a long time, our adrenal glands take up a lot of the slack, and introducing thyroid hormone that improves the metabolism means the whole body has to work a lot harder and its not used to it.
The first step in treating adrenals is to get a 24 hour saliva cortisol test. There are then adaptogen herbs and glandular extracts that are possibilities. A lot of the treatment is lifestyle. Reduce stress, learn to meditate, rest more, sleep well, eat well and by skip meals, etc. Make sure vitamins are optimal.
At the same time, you can introduce hormone super slow, which is much easier to do with Levo.
Many thanks for your reply. I'll answer properly later. I'm whole dead at moment (usually half dead) as I was trying to tackle the garden a bit so just sat down with water and cocodomol.
My GP would not even consider it and the new endo is an absolute you know what, has cut my six monthly visits to 12 months for the parathyroid problem. GP only does antibodies once a year which happened to be in January this year and was off the scale on the hospital lab, ie. over 1300. So she does the TSH then and only T4 of course. Almost impossible to get an appointment so TSH is not done first thing and has time to suppress. I always get all my results printed off as I don't trust them (I get pth done every three months until she reads new endo letter saying to do calcium every six months) They are totally ignorant about parathryoid but I am not the only one who suffers with this ignorance.
Anyway, GP TSH was 4.12 (0.35 - 5.5)
Free T4 was 14.0 (10.0 - 19.8)
I have done saliva tests in the past with medichecks and there was some controversy over one of the readings so I was told by others, also a blood test, so I did one with Regenerus which said as I recall low, low, high high and last week did another saliva test with Thriva
Waking13.5 nmol/l6.0 - 21.0 nmol/l
Midday5.01 nmol/l1.5 - 7.6 nmol/l
* Afternoon6.3 nmol/l0.1 - 5.5 nmol/l
* Evening3.03 nmol/l0.1 - 2.0 nmol/l
I have tried taking ashwagandha, holy basil and rhodiola drops, did nothing.
I suffer extreme anxiety, I was sort of getting on okay until November last year when got this horrible nausea which lasted for about a month and then the anxiety started. I don't know what set everything off again.
I had a terrible time in November 2015, with racing heart, nausea, lost two stone and no sleep for 13 weeks except around 1 hour a night on a xanax. Was under a useless private endo at the time and all I got was more expensive tests to check my pancreas and gallbladder. It never occurred to her to check for antibodies and I had never heard of such a thing and of course TSH etc was "within the normal range", my most hated medical term.
I got so desperate for sleep, I was a walking zombie and trying to do a two hour train journey to visit my father in a nursing home, took some xanax that a friend gave me and unfortunately although I got some sleep, I was groggy and tripped down the stairs. My cleaning girl phoned for an ambulance as I was covered from head to foot in bruises, so hospital had a record of my severe osteoporosis but didnt x-ray. 15 months later after suffering "unexplained back pain" was found I had a T5 compression fracture, so too late for kyphoplasty. I still feel very bitter about it, but that is what I am up against, living in one of the worst parts of the country in my opinion with the fantastic (not) Cambridge teaching hospital Addenbrookes!!
I suffer a lot of pain but it is muscular I am sure as my diaphragm gets so tight as does my throat and the only thing that relieves it is a benzo but I cannot afford to go down that route again.
Oh yes, I forgot, when I came out of the hospital after a day and not being x-rayed I was prescribed some anti depressants although I couldnt convince them that I was not depressed, just sick of feeling ill. Anyway, they did seem to calm things down and when I investigated, I found a study had been done on mirtazapine on normal healthy adults and was found to quite drastically suppressed cortisol.
At the beginning of 2017, I saw a functional medicine practitioner who was also a GP, sadly she was only interested in money and just sent me copies of stuff by email that I already knew. The second and last visit, she did write a private prescription for NDT but I only took for about 3 days and made me feel quite ill except for one day when I popped a mirtazapine the night before. So I am thinking the NDT was not good with highish cortisol. I experienced the most awful bird screaming noise to the point where I closed the window and found it was my ears!! I was dizzy and really weird so I thought I am not risking that again.
I also have a prolapsed mitral valve which was checked out again a couple of years ago and possibly explains more anxiety and racing heart.
This woman found she was not able to practise at the complimentary health centre as they were not covered by the CQC, so I literally got dumped. She never even enquired how I got on with the NDT, nothing. Was so disappointing as I thought I had struck gold having a Functional Med person within walking distance.
So here I am back again 3 and a half years later feeling like absolute rubbish. I have tried taking the mirtazapine again, but not having the same effect as before.
Regarding the vitamin D, that fluctuates a lot, for example on the same day that I did the medicheck finger prick test first thing in the morning, it was 72.4 but by midday at gp surgery (for pth, calcium and Vit D) it was 64.4. I did a liver function test with Thriva on Monday and vit D came back 82.4.
I feel I am a hopeless case. I think all the years of stress I have had is catching up on me, widowed at 38 with a nearly 4 year old, and then 15 years of agonising and I mean agonising stress with a vile private moron specialist who overdosed my mother with steroid injections and an appalling nursing home, where the registrar wouldnt give me the death certificate due to suspicious circumstances. That all ended in 2005 when she died and then my dear old dad, who was in sheltered accommodation for several years, also treated very badly but we got there in the end with a lovely nursing home and he only lasted 9 months there and died in 2016, six months off his 100th birthday. I just hope to goodness that I dont go on for that long. I am ready to go now, lol, but my daughter needs me as recently diagnosed with TM and I have a gorgeous 3 year old grandson.
So that's about it, I bet you wished you'd never asked lol. Oh and I do take a daily Optibac probiotic plus an expensive Swedish probiotic, the latter because studies have found that a particular strain helps osteoporosis and they have the license for it so can charge all they like I guess. Probably a con and having high end and sometimes over blood calcium is not helping my bones. I try to keep on the move and also have a vibrating plate specifically for osteoporosis.
The cortisol results definitely look high, so that is probably why you're struggling to manage T3. NDT also contains T3, so it woukd have been the same problem.
The good news with that is there are at least things you can do.
Mindfulness is one of the biggest things that's helped me, and learning to take good quality rest will help with a lot of the other issues you've had, too.
I really love the book Mindfulness: Finding peace in a frantic world. By Danny Penman and Mark Williams. Its an 8 week course and comes with a CD of the guided medications you use.
With everything else for adrenals unfortunately it's a bit more fuzzy than thyroid, not everything works for everyone. You've just got to keep grinding through, trying out one thing at a time and then after a few months moving into the next.
Thanks for advice. I'm so puzzled why everything has gone pear-shaped again since November. I had a 4d neck scan for my parathyroidism in September and wondering if the dye could have upset the thyroid. So you don't think I should experiment with T4 then? I'm grateful for your explanation of T3 and cortisol as nobody has ever suggested that. It makes sense now with that one day I was okay on NDT because I took a mirtazipine the night before as I was a bit anxious about going to my late mum's cousin's birthday bash who was 100, ugh another long liver in the family! He actually died last October 5 months before 102!!! I'm off to bed now which I dread. Thanks for your help x
I think you could treat adrenals and try to introduce T4 at the same time if you want to try thyroid hormone again. If you feel speedy again on the T4, you can try the super slow method, cutting tablets to get a teensy dose and incresing by tiny amounts.
elaine2447, I may be missing something as your story seems quite complicated, but I don't see any mention of you having tried levo (T4), only NDT and T3. Is that correct?
My middle name is complicated unfortunately and no never been offered T4 as I'm "fine" everything within the normal range and their range is conveniently wider than the norm with everything apart from my antibodies >1300 (0-60)
Yes I understood that your GPs won't prescribe because your numbers keep falling inside the range. Which of course we all feel is very wrong when you clearly have autoimmune thyroid disease. But I'm wondering why you chose to try self medicating with T3 rather than T4. I would think that T4 would be a safer one to try. As SilverAvocado says above, if you find you react negatively to the usual low starting dose of say 25mcg T4, you can take it even slower by splitting tablets and working up over time. When a body has been deprived of sufficient thyroid hormones for a very long time, it can also take a very long time to adapt to using them again (and learn not to over-rely on the adrenals), so slowly introducing the 'gentler' T4 might be a better way for you to proceed.
Hi thanks for replying. I was ill advised by a very nice lady I've known whose life was changed around by T3 only and she suggested this.
I know nothing of thyroid problems but could write a book on hyperparathyroidism or osteoporosis. I'd never even heard of Hashimotos and when I was going through hell nearly 4 years ago just starting out of the blue when at the time I was privately under the most useless female endo I found with so called imperial college credentials, who was so called treating my parathyroidism. When I told her of these sudden nightmare symptoms it didn't occur to her to check for antibodies and I knew nothing about thyroid . So instead she sent me for expensive scans for gallstones and the pancreas!!! . I had 13 weeks solid no sleep, nausea lost 2 stone and racing heart. It was only when I saw an endo surgeon in London in March 2016 that he sent me for another neck ultrasound and this time the guy was a well known sonographer and straight away said he thought I had Graves and told endo surgeon who did antibodies test. The previous overpriced numpty in Cambridge didn't see the inflammation and said possible parathyroid adenoma. So that is how I was introduced to the wonderful world of thyroiditis, by accident really.
I'm sure SilverAvocado is correct about my adrenals and its stress related as if I were to take a lorazepam I am a totally different person and even the back pain and tight diaphragm and throat lump feeling eases. But I can't afford to go down that route because they are as lethal for withdrawal symptoms I think as xanax. I am perplexed why this all started again last November 3.5 years on.
Elaine2447, I don't think you should blame your friend, she probably did well on T3, and a lot of people do. Its more uncommon to have difficulty introducing T3, but it still happens to a lot of people.
Its well worth becoming knowledgeable about thyroid before dipping into self medicating, as this is a serious illness and these are serious drugs. You can get a lot of improvement with them, but also get into a pickle by not moving carefully and deliberately.
Good advice thanks. I don't blame her at all, she evidently didn't realise the connection between wonky adrenals and T3. In fairness, the anxiety and nausea started a good couple of months before my dabbling with T3. It just didn't help and made me feel more jumpy. I just wish I could knock this on the head and get rid of the neck python which is keeping me company constantly. X
Oh, I hadn't realised it started months after. That makes it sound like it isn't adrenals, as that would be more a difficulty in introducing T3 rather than staying on it. In the original post you say you were taking it for 4 weeks?
The details are quite important in figuring out what's going on with thyroid, and you keep saying slightly different things!
Overall what I'd advise is to do everything by the book and in the most ordered way. Get hold of some Levothyroxine. Start on 50mcg unless you have any problems of feeling racey on that, and if you do take a couple of days off and start again on 25mcg (or less if you struggle to start). Whatever you choose then stay on exactly the same dose for 6 weeks, and then get a full thyroid panel blood test.
If you need advice with the test, post it on the forum. At the point you're looking just to adjust the dose - you don't expect to feel much improvement at that point, and may feel a bit worse. If you're lucky you'll get improvement.
Adjust the dose based on what the blood test says, and then hold for 6 weeks and get another test. You will probably need to do this a few times to find your ideal dose. Its possible you'll need to introduce T3 in the end, but you won't know that until you've raised your Levothyroxine a few times.
While you're doing this, read the forum as much as you can, look at other people's blood tests and interpretations by knowledgable members, and if you're well enough read the books and journal articles people recommend. You need a lot of knowledge to self medicate, especially if you come across complications.
I'm so sorry for confusing you. 3.5 years ago the horrendous heart racing, nausea and no sleep started and went in for 13 weeks. Nobody knew what was wrong just blamed it on anxiety and at that time I was under a private endo for parathyroidism. She didn't have a clue and because I hadn't heard of thyroiditis and assumed it was the phpt. She could have done an antibodies test but too stupid. By 13 weeks I was a zombie lost 2 stone and was quite frightened what was happening to me. A friend gave me 6 xanax to be taken sensibly but I took the whole lot at once. Slept for the first time I. 3 months for 10 hours. However was groggy and tripped down the stairs, cleaning girl found me and phoned for ambulance. They came and took me to local awful hospital where they had a record of my severe osteoporosis, I was covered in bruises and my back hurt. All they were interested in was me being a nut job so no xray despite bruising and back hurting. Tried to say I wasn't depressed just sleep deprived but no I then had humiliation of visits from mental health team and a psychiatrist out me on mirtazipine which I've since learned suppresses cortisol . So I was muddling along okay mentally but back hurting and 15 months later had xray for unexplained!!! back pain which revealed T5 compression fracture. In the meantime a neck ultrasound looking for parathyroid adenoma revealed inflammation and so antibodies tests was done. So since March 2016 apart from pain and the worry of osteoporosis and phpt I have been okay, always tired of course but doing crazy DIY looking after my four cats travelling miles every week on a train to visit my daughter with sick grandchild, who fortunately has improved and live only 11 mins on the train now. Then mid November 2018 came over feeling anxious and nauseous, that lasted for about a month and out of the blue whilst walking home one day felt a sort of lump in my throat and to date is always there, plus anxiety and feeling nauseous. So my friend after seeing old thyroid panel and me having an antibodies test this past January, she suggested T3, which I started mid February for about 4 weeks, felt worse so left it off about two weeks ago. I am hoping the neck thing is cricopharageal spasm which is common and apparently only lasts for a couple of weeks at most but I have to be different. My back muscles and diaphragm are so tight they cause me pain which is only relieved with a benzo which I am reluctant to get used to. I've no appetite and usually only manage a light salad at night. Can't face anything hot. The thought of going to meet a friend or going to my daughters fills me with panic which is crazy I know.
elaine2447 If you decide to follow through with the plan outlined above and need help sourcing Levothyroxine, ask in a new post for members to share their sources via private message.
I just found out that the dye used for a 4d neck scan for parathryoid is iodine based and am wondering if that is what has upset my thyroid and increased antibodies, even though it was last September as I was getting by and feeling okayish until a few weeks later. Since end of 2015 I've had 2 ct necks scans, 1 sestimibi nuclear neck scan and 1 ct of abdomen. Just hoping all this dye has caused something more serious and the cause of this feeling in my throat/ neck. However, on the plus side I did read that scans causing thyroid cancer are more likely in a younger person.
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I'll get back to you later. 
In fact the numbers who need to be gluten free is something like 80%, so if you don't get bad symptoms when you're accidentally glutened, you could try introducing some, and if you don't feel sick you could start eating it again. A smaller percentage of Hashi's sufferers get similar benefit from being dairy free, so it's worth trying that completely just to see. 
I'd appreciate some advice
latest private blood results...please help 
Medi checks blood results
Update to Previous Thread with Results
Panic and agoraphobic feeling.
