Feel like I'm losing my mind : 24 year old male... - Thyroid UK

Thyroid UK
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Feel like I'm losing my mind

24 year old male. Been hypothyroid since early 2018. Been stable on 50mcg levothyroxine up until a few weeks ago.

A few weeks ago I started feeling excessively tired and *strange* but nothing unbearable.

Got bloods done privately and it showed my TSH was over 100, T4 6.4 and prolactin 455. Brought the results to my doctor.

Dpc insisted on retesting the blood results before increasing treatment and delayed the entire thing another 15 days.

A few days ago things took a turn for the worst. I went to bed feeling relatively normal then woke up in a state of extreme confusion and disorientation.

I gone to the ER, they rechecked my bloods and told me to increase levothyroxine to 100mcg per day.

Been on the 100mcg dose for 2 days now and feel no better. Extreme disorientation, detached from reality feeling.

Couldn't get to sleep until 5 or 6am last night as was experiencing vivid Hypnagogic hallucinations. Tactile, visual and auditory. Every time I closed my eyes I would suddenly be having full blown conversations with people about random things. Random images, floating and jerking sensations ect all while being fully conscious. Multiple times I had to get out of bed to try and work out if I was hallucinating reality.

I guess I just want some opinions on if all this is normal with hypothyroidism and high TSH? A little scared of passing into a coma :( the fact that the ER doctor had never heard of a coma from hypothyroidism just concerns me even more. According to her that can only happen in hyperthyroid

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MivoUK

Have you had a change of brand of Levo prior to feeling like this? If so, what brand were you on and what was the new brand (when on 50mcg)?

What brand now that you have been increased to 100mcg?

Have you had thyroid antibodiesl tested - Thyroid Peroxidase (TPO) and Thyroglobulin (Tg) antibodies?

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Thanks for your response.

I was previously taking Almus levothyroxine but been on Teva levothyroxine for about 2-3 months.

I haven't had any thyroid antibodies tested. My doctor just wanted to retest TSH and T4.

I used to feel a nice boost after taking my levo. Originally when i was undiagnosed back in 2018 with high TSH i remember feeling instant relief after my first dosage of levo. Hence I'm just a little concerned that i feel exactly the same 2 days later despite increasing to 100mcg. I know its only been 2 days but still!

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I wonder if you are reacting to the Teva brand. Many members have had severe side effects from this brand. If you can link the timing of the change of brand to the onset of the symptoms then this could be your answer.

I would ask to go back to your previous brand and see if things settle down.

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You read my mind SS! I just had to add lidothryrine (cytomyl) and it messed me up but good.

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You might need to try NDT which you cannot get prescribed in this country - there are ways of getting it from abroad and a member on this site helped me order some from Thailand which was pretty straight forward. It might be worth trying it if the artificial thyroxine doesn't work for you.

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TEVA was aimed for patients who are lactose intolerant but seems to be given out to all. It’s got very different fillers and fillers are a common problem with many so hopefully reverting back to your usual brand will solve the issue.

All brands have a mixture of fillers to bulk it up and keep it stable so often a reason to have to change brands. Once settled back and well on your previous medication I would ask GP to put of prescription which brand and also NEVER be given TEVA again and why. Check as well that Pharmacy put it in your notes.

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I don't have any answers for you but oh my god that is horrific. I truly hope you find out if your dosage pushed you into Hyperthryroid. Get well soon and keep in touch.

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Others here will be more helpful than I as far as an answer, but I just wanted to say many of us have been through puzzling reactions to different thyroid meds so have empathy for you. ... Sometimes it helps some just to know that you are not alone. I so hope you get help soon.

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Hello MivoUK, Those sound like really horrible symptoms. A range for those results would help people here see how severe they are. The symptoms you describe could be due to severe hypothyroidism. Extreme confusion, disorientation, inability to think like a thick brain fog and depression are common symptoms of untreated hypothyroidism. 50 MCG is a low dose so it may not have been enough to manage your condition. The increase to 100mcg may help but will take a few weeks to have an effect. The hallucinations sound horrible, I only experienced these when I was thyrotoxic (hyperthyroid). You sound unwell, distressed and frightened. Is there a sympathetic GP you can see to discuss this ? You are entitled to some support and some answers and at the very least your doctor should rule out immediate risk, consider other causes, talk to you about your concerns about a your hallucinations and explain the plan they have for treatment.

Can you get someone to go to your doctor with you to advocate for you as it may be hard to explain your situation as you are so ill?

Michael

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I just wanted too say that sounds awful ! Here in the US I dont think an emergency physician would even release us if we were feeling like that. I hope you get this figured out as it must be awful.

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Don’t forget to get your vitamin B12 and folate levels checked!

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@DebraNL I really agree with you and glad you mentioned Folate and that can be identified under various names as for some there could b e a bad reaction to the synthetic type of folic acid. years ago I read a lot on Dr Ben Lynch's site and that is one reason I might some day do the 23andMe tests and have tried to get my brother to also test as we have in our family several people with the results that could come from that type of genetic issue.

But what Dr Ben Lynch had said was even if you can't afford the genetic testing, then at least make sure you get the methyl forms of folate or the real folate in vegetables. So I do that on both counts.

On Dr Ben Lynch's site one can find all the different names the real good kind of folate can be listed by on labels for supplements.

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Teva is lactose free but contains as fillers acacia powder and mannitol. I could not tolerate the fillers, although my symptoms were not so extreme as yours. I just got palpitations ( resting heart rate 100 plus) and ‘jumpy’ legs. I am now on NDT and doing very well.

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What a horrible ordeal. I think doubling up the dose straight away is not really great practice, especially when you've been settled for a while. The body (and the brain) need time to adjust as it can send the whole system out of whack. Rapid changes can cause an increase in confusion, disorientation and psychiatric disturbance. Do you happen to have any hyper symptoms such as rapid heartbeat/palpitations and anxiety that might suggest you are now over treated?

I had similar episodes after going hyper in January. Not quite as bad as yours but I couldn't sleep because my head was so loud. I would try to close my eyes, desperate for sleep then jump wildly because of the commotion going on in my brain and images coming at me when I closed my eyes. I couldn't switch it off for days. I felt like I was walking through the floor like a glitch in a video game. I was in some sort of alternate reality. I couldn't hear properly either and I had episodes of sleep paralysis which was not pleasant. All this while undergoing dose changes.

As you know, hypothyroidism presents both physically and mentally. Unfortunately, treatment tends to focus around countless blood tests which often don't reflect the way the body or brain is actually responding to treatment, if at all. Just because some people have 'normal' blood tests following treatment, does not indicate that their body is functioning normally with them. Studies have shown that the hypothyroid patient can at several times during their lives present with psychiatric problems. Visual and auditory issues are not uncommon, whether treated or not.

The brain is very sensitive to the thyroid hormone and responds differently than other organs. Studies have indicated that patients may benefit more from a combination of T3 and T4 as some patients cannot convert the hormone effectively in the body and it doesn't matter how much T4 such a person may take because they won't be able to use it properly.

Hypothyroid patients can develop psychosis later in life, after months or even years of thyroid treatment, usually after the more obvious physical symptoms and these issues even occur in sub clinical hypothyroid patients indicating that even small thyroid discrepancies present with considerable cognitive, auditory and visual problems. People who continue to present with mental and cognitive problems may suggest they need to change to a combination dose as they may be resistant or intolerant to a standard daily dose of Levo.

The changes you experience can be down to your existing endocrine dysfunction, or a factor complicating the management of your condition such as another undiagnosed issue or they could simply be a consequence of treatment whether under or over treated or intolerant.

I would definitely get antibodies checked just in case they missed it. People with autoimmune hypothyroid can fluctuate much more during their lives due to the changing state of their thyroid. I have autoimmune hypothyroidism and I have been yo-yoing since January this year. I was diagnosed August last year.

Hope some of this helps you and hope you feel better soon.

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Wow, that was fantastic, so much useful info.

Michael

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Yes I agree with Mike77 that your reply had lots of really good insight. But to both you and @MivoUK, I ask, have you both read the books by Paul Robinson who had at the time her wrote the books been a very miserable person on the typical Levo type of medications. So he investigated his whole situation and found he was feeling great on his very complicated T3 only approach as he is afterall a total hypothyroid patient by now.

So from all the reading I have done since 2014 when I found out I had NO antibodies when I did TgAb, TPO and TSI which I now thoroughly say would even be needed for this person MivoUK. So I agree the antibodies tests must always be done before having hypothyroidism slapped on them as a diagnosis as what I found out whas myself and two male friends all had a reverse T3 issue, but NO antibodies for themselves in their cases either. So our problems are related to the reverse T3. The two men are not going to do anything about their situation, but I sure did lots and did get my reverse T3 down to the lower edge of the ref range in 2017, but as I still have not yet got more of the T3, my reverse T3 has been climbing higher. I guess over the years since 2014 I have had to pay $35 each time to have a vial of my blood sample sent to the USA for the reverse T3 measure each time I do the usual TSH, FT4 and FT3 tests which are covered in Canada.

This in my opinion is a topic not nearly as well covered in this site as it should be, as one poor man called Dawid86 in his mid 30s found out his reverse T3 after a period of time on the typical T4 containing medications had climbed to a level that was double what myself and my two friends had. So when my endocrinologist asked me if I wanted to have a T4 continuing medication I said NO way....NEVER. I learned enough reading the Paul Robinson books that I am certain that people are being misled by the way the medical system handles this.

So I am glad I read the case of Dawid86 on this site to learn to never get into that situation and it seems to me that MivoUK is most likely in that situation of having had reverse T3 climb high without even knowing it as rarely do people get tested for reverse T3.

So, I am certain that this person MivoUK has an issues with reverse T3 having gone higher since the usual Levo medication has been used.

So just as Paul Robinson said he felt awful for years until he figured out his situation, I was glad I read his books because I now know enough to not to be in the same situation. I did read several other books and so did the man called Dawid86 who was on this site a long while ago pointing out how his reverse T3 got so high due to T4 meds and he was on a mission to get the level down. He is trained in biology and was inclined to be very insulting to everyone. So I sure hope he has succeeded as I feel sorry for anyone who feels the effects of extreme fatigue and reverse T3 does contribute to that and the more you increase the T4 containing medication the worse it will get.

So as Dawid86 had listed several of the books I had read I knew we both were understanding it the same way except he would not listen to how I had managed to get my reverse T3 down to 8 ng/dl in 2017. The time before last it had climbed to 12 ng/dl and then last time 14 ng/dl so I know if I could afford the T3 I would know exactly how to take it and in such a way so as not to lose my own natural ability.

The only thi nbg holding me back is the high cost. It was just over Cdn$600 in that year of taking T3 and given I can get it in Canada in an under the table way, I am terrified that if I pay for it I might lose the whole package and there is no recourse to get the money back. So I am so far just existing on making my own thyroid hormones which my body can still do. But if I do get the courage up to get the T3 from an unnamed pharmacy, as I know the rules of this site, then my one payment will last me two years. And I* will use the T3 on an on and Off again way like I did in 2017 in order to retain my own ability to make the hormones. There is NO way I am going to be turned into a thyroid patient like I was turned into a diabetic by being told to take insulin when I was 24.

Also I highly recommend to anyone to look up the site of Dr Westin Childs and read all he has on his site as he is an exert in this area. he says that if reverse T3 is 15 ng/dl or less that is OK. And as we all know there is always some level on every single mammal, even crocodiles will have a higher reverse T3 when they need to slow down their metabolism and hibernating bears have high reverse T3 to survive on fat without eating for months.

I also read the prime book by Dr Wilson which is available online to read for anyone to see by chapters. Look up wilson's temperature syndrome. His name is Dr. E. Denis Wilson. So his method of going on and off is a way to retain one's own ability to make one's own hormones without becoming totally dependent on them. So remember that people like Paul Robinson now cannot live without T3.

So my prediction is MivoUK has to become an expert in this, as we all do in order to know how to handle our situations.

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Absolutely - I would also add Dr John Lowe [Deceased :-( ] to that list. :-) xox

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So thyroxine is bad?

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It depends on the case.

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Some great reads here. Thank you for the information. Well worth taking a look.

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I think the dose is too high it may need to be adjusted

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What makes you think that? When the OP's symptoms started he was on only 50 mcg of Levo, a starter dose, and his TSH then rose to 100 which is not a symptom of hyperthyroidism or over-medication.

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This was my bloods from around 2 weeks ago ibb.co/tBhNpdv

Not feeling much difference from the 100mcg dosage now in all honesty :(

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Although people can feel the benefit of a dose increase straight away, it takes around 6 weeks for levothyroxine to reach a steady state, where the med ingested is in equilibrium with what is utilised and/or eliminated by the body. So in general, we have to wait for things to take their natural course although I appreciate that's easier said than done whilst experiencing the horrible symptoms you've reported. It's perhaps hard to believe that a different brand of Levo could affect you in that way, but as has been said to you, it may be the excipients in Teva that are at least partly at fault and I'd suggest asking your GP to urgently write a new prescription that you can have filled with any other make than Teva. I don't have a problem myself with Teva or any others, but I did once have a very similar experience with co-codamol post-surgery and my surgery told me to stop taking them and immediately wrote me a script for different pain relief. You need to take Levo and you need a make that doesn't upset you in the way Teva has, if indeed Teva is at fault, so your GP must provide that to you.

edited to add: I see below, that you have now arranged this, let us know how you get on with the new tablets

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I was started on 100mcg of levo with no issues with a TSH of 40 he's not over medicated with a TSH of a hundred

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Best of luck with everything Mivo. Sounds horrible what you’re going through

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Thank you :)

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Hi MivoUK how long have you been on 50mcg as this is usually just a starting dose then increases. And if your TSH is 100 I can't see that dose doing anything for you. I had something like you are experiencing, but not as severe. Started seeing thinks that weren't there, slurred speach along with all the usual. A friend of mine is a psychiatric nurse and the first thing they test when a new patient arrives is thyroid so this can be symptoms. Go back to your Dr and damand help. Good Luck x

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Here is a screenshot of my blood results if that helps ibb.co/tBhNpdv

They said that they couldn't increase it any quicker as more than doubling the dosage could be dangerous.

I've been taking the 50mcg dosage for 12 months and was stable until all this.

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I don't know much about interpreting results but when I was first diagnosed I started on 50mcg for a week then went up to 100mcg . There are lots of good people here that know loads. Hope they can help x

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The thyroid treatment guidelines currently being worked on by NICE (not yet completed) seem to be going in the direction of starting people on nearly full replacement dose of levothyroxine.

That could mean starting doses of around 100 micrograms being quite common.

Sorry, but I can't stop myself pointing out that, for example an increase from 25 to 50, or even 12.5 to 25, would also be a doubling of dose. Yet they occur all the time. And we have seen plenty here having their doses summarily reduced by 50%.

Under ordinary circumstances, changes should be slow, slow, slow. But severe under-dosing might very well need a considerable dose increase.

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Definitely wont be dropping below 100mcg that's for sure. Any side effects from the quick increase I will just have to battle through I guess. Its better than dropping into a damn coma!

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I looked at those tests you gave and wonder if your doctor has commented properly?

Do a search for

reasons for high prolactin in men

And are you taking any externally provided testosterone for it to be so high?

So if your doctor only did TSH and FT4 and FT3 as they often only limit to that, but that is NOT enough to prove you have hypothyroidism if you don't have any antibodies, so it would be way safer to do all the full panel of tests.....

TSH, FT4, FT3, reverse T3

and at least two antibodies tests for hypothyroidism TPO and TgAb

or now also that you have the possibility of ......ask your doctor if there is a reason to do the TSI antibody test that has more to do with hyperthyroidism. I did that test and was sorry I wasted $75 on it as it was negative and I know there is no chance I have that problem.

The problem that you have a very high TSH seems the body is still trying to stimulate more production even when you are already taking a T4 medication. I would have thought TSH should go really low in that case.

So the fact that TSH is still very high, is cause for concern.

Everyone has some level of reverse T3 and it is wise to take the test as I suspect after having T4 for a while that could be high too.

Having high reverse T3 will contribute to extreme fatigue. and it would be why FT3 is low which might have been why they suggested you have hypothyroidism, but if they have not proved that with antibodies tests you could have a less than well informed doctor.

Here is a copy and paste from WebMD which came up as the first in the results when I did that search mentioned above

======quote below======

Normally, men and nonpregnant women have just small traces of prolactin in their blood. When you have high levels, this could be caused by: Prolactinoma (a benign tumor in your pituitary gland that produces too much prolactin) Hypothyroidism (your thyroid gland isn't producing enough hormones)Jan 22, 2017

Prolactin Levels Test: High vs Low, Normal Range - WebMD

webmd.com › a-to-z-guides › prolactin-test

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I asked to be changed from the TEVA brand which a new chemist gave me instead of Mercury Pharma. If you go on the internet you will see that TEVA (mine was 50g) contains mannitol about which some suggest cause problems. Women in France (many thousands of them) complained about this brand when it changed ingredients to include this and in the end the French government instructed the company to change ingredients.

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Thank you i received a new prescription today and will try and get old brand from pharmacy this evening. I had no idea the brand would make such a difference!

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Hi

Just need to say I can't say for certain that this is the cause of your symptoms. It was one thing I investigated when I didn't feel good. Check the info in the packs to see if

the ingredients are different. But - also see your doctor! (though I have found that

general GPs are not always very helpful).

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Hi MivoUK, I had a similar experience when my Teva dose was doubled in 2016.

The many of the techniques that helped me manage the extreme reaction are on the pdf below.

(I would suggest you ask a trusted person to assist you).

sompar.nhs.uk/media/6558/gr...

I had a conversation with a psychiatrist (in Dec 2018) who said that Levo can cause symptoms of mania in those without a previous diagnosis, such as you. GP's were unaware of this issue!!

I would go back to your GP as you may be suffering as I was, from too high a dose:

drugs.com/sfx/levothyroxine... of Overdose

Change in consciousness

cold, clammy skin

*confusion

*disorientation

fast or weak pulse

lightheadedness

loss of consciousness

sudden headache

sudden loss of coordination

sudden slurring of speech

I hope this helps - it was a scary experience to which I am grateful I had people who knew how to help manage the symptoms - otherwise I may have been misdiagnosed based on my behaviour...

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You've not given reference ranges but I'm assuming that your prolactin level is considerably elevated. It can be associated with hypothyroidism but equally it can be indicative of both pituitary and hypothalamus problems. Has your GP suggested further investigation of that result?

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Here is a screenshot of the blood work with reference ranges. ibb.co/tBhNpdv

My doctor hasn't suggested any other tests. Just wait 2 weeks on the 100mcg dosage then retest. He said if its not in range he will do an endocrinologist referral then.

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Looks like your TSH is OVER 100. Guess your lab doesn't want to put any numbers on it once your TSH is that high. Might be worth the $$ to use a private lab to test and see what numbers they come up with. You could get that done along with getting your antibodies tested.

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This was from the private lab. The ER apparently detected the TSH in the 130s. That was 15 days after the private blood test results posted above.

I'm definitely going to order a full panel for thyroid along with the clinic visit for a venous sample. So I can get vit b, tsh, t3, t4, antibodies and everything else checked.

Don't think my doctor or the ER even tested my T3 levels.

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A raised prolactin level of over 400 needs to be addressed immediately! I ended up with a pituitary tumor that messed me up for years. I’m not a doctor just one who has been in the trenches,

Teresamarie

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Did they check you Blood Pressure. Sometimes if it is reLy low can cause strange feelings . Also jumping from 50 to 100 in meds’ may be too much at once. Go back to you Doctor asap

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Blood pressure has been relatively high at around 150/95 for the last week or more. Its not changed before or after increasing the levo dosage.

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Defiantly get the B12 tested, I went through some of the same symptoms although they did not get as bad as yours but they did start off

with me feeling excessively tired and strange (just felt like there was something wrong but could not put my finger on it) In fact I went to see my doc and told him that I just didn't feel right and asked for a full blood count blood test so we could see what was going on.

day by day I was getting more and more confused and woke several times from vivid dreams disorientated.

My bloods came back, my thyroid function was just within the "normal" margins but my bloods showed a lack of vit B and I was diagnosed with Folate-deficiency anemia.

I don't know if this will help but here is an article from the NHS explaining what it is.

nhs.uk/conditions/vitamin-b...

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100 is a massive increase from 50. I would suggest you call the doctor and explain what is happening to you. Maybe you need to increase more slowly. I had similar reactions but not the same, physical panic attacks where my hands would tighten into claws where I couldn’t open them let alone work out how to find my way home. It was horrendous. I called the doctor and she suggested to increase medication much slower which I did and this helped. Good luck to you xx

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On the assumption that your problem is caused by the Teva you were taking, you will have to make arrangements for your prescription to be given to you on paper (if it isn't already), which you will have to collect from the surgery, so that you can check it.

Before going to a pharmacist in future phone them up, tell them what you have been prescribed e.g. 125mcg Levo or whatever, and ask how they would fulfil the prescription and with what brand. Obviously if you have a paper prescription you can check it is appropriately worded for you (i.e. gives a specific brand name and/or mentions that you must not be prescribed Teva) and take it to any pharmacist you want, and it is always worth checking up before you leave the house that they can give you what you need.

Some people don't tolerate mixing brands, so you might not do well with 100mcg of brand A and 25mcg of brand B (for example). If that happens in the future you might have to start cutting tablets, but you might find a GP is not keen to prescribe for that (even though it might be cheaper for them), but that is better than mixing brands if you don't tolerate mixtures.

If you are ever in the situation where you have to cut tablets then buying a scalpel or hobby knife with spare blades is a good idea in my experience (try Amazon). The alternative is a pill cutter - but they don't come with spare blades and some of them go blunt very quickly. You'd have to ask for brand suggestions if you ever wanted to try one - some people like them.

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A little scared of passing into a coma :( the fact that the ER doctor had never heard of a coma from hypothyroidism just concerns me even more. According to her that can only happen in hyperthyroid

I'm absolutely shocked and horrified that an ER doctor has never heard of myxoedema coma. If they've never heard of it they can never diagnose it - and that could kill the person with the condition. When you feel well enough I would make a complaint about the doctor you saw. They need educating, urgently.

en.wikipedia.org/wiki/Myxed...

patient.info/doctor/myxoede...

When the doctor referred to coma as being a hyperthyroid problem I'm guessing she was getting confused by "thyroid storm". That just isn't good enough!

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I would suggest you speak with Endocrine. I was kept awake nights and days but once hydrocortisone was reduced and growth hormone introduced I felt better. It's going 5 years now and I still experience, occasionally, being awake all day into all night into following day. Then there are days I have naps throughout the day or l feel so tired I am in bed for most of the day. This condition is extremely dibilitating. I have refused medication for my depression because I did not want to be dependant. I hope things improve for you. I am here if you want to talk.

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Hi MivoUK

What a terrible experience you are having

As others have said, do consider trying to change brand and go back to 50 for a week, then 75 and so on?

Good luck

Alps Holiday

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Based on personal experience plus this post w labs compared to those from approx a year ago... I urge you to seek out an endocrinologist w priority to your chronically high prolactin. (Kinda curious as to why you requested this test on your own?

Most would have no clue to even consider!)

Please read up, research the many aspects of how a super tiny benign ‘tumour’ on the pituitary gland can throw off the endocrine system... specifically the thyroid. Plus some symptoms unique to men that resonate with your previous post.

Additionally, again from experience... any medications working within an endocrine system function (in your case Levo) will be altered when testosterone supplementation is added. Anytime I added / changed testosterone, all other med dosing got so messed up (along w my energy and my MIND) that I decided it wasn’t worth it, finding pregnenolone and/or DHEA was enough as a ‘precursor to testosterone’ allowing my body to sort itself out on its own. This did not destabilize other meds.

Obviously I’m not a doctor and everyone is different, their body, reaction etc. however, having been through very similar (my tumors were on my thymus and parathyroid but with the same fear, frustration followed by testing on all endocrine gland feedback for possible disruption and monitored currently) felt compelled to encourage you to follow through with this. Or quite possible, perhaps, you already have?!? If so, forgive the long winded nag.

Regardless, just hoping you get some real answers soon, providing some relief with a path forward and get to feeling better very soon :) M.

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I stated feeling strange, detached and just very abnormal. Pain in my lower legs and ankles when walking, dizziness, lethargy ect. Assumed my estrogen was raised from the 250mg testosterone cyp injections each week so I ordered bloods. I made sure to include thyroid and the lab includes prolactin with the thyroid panel. Otherwise it would have been the last thing I thought to test.

I'm going to research this tumor now. Thank you... The very thought of a tumor makes me shiver :( I really hope not.

In honesty the testosterone injections are not medically prescribed. I cruise on 200-250mg of test cyp per week year round. And increase to 500, sometimes 800mg a week for 12-16 weeks of each year. I've been told that I likely have a form of body dysmorphia as know matter how many doctors tell me that I'll be dead before I reach 40 or 50 I just can't stop the injections!

I did stop taking anabolic steroids last year around the time that my hypothyroidism was diagnosed. And as you can see from my previous bloods my testosterone level is very low. Its not surprising as I started cycling at the age of 18.

So I really don't think I can stop injecting completely. As I will feel much worse with low testosterone. Maybe if I cut the injections down to 125mg per week which is like TRT? Maybe that could work. As to be fair, I did feel MUCH worse after my last 250mg testosterone injection.

Doctor wants to repeat the bloods after 2 weeks of the 100mcg dosage. So the 21st or 23rd... Can't think which one of the top of my head. If its not dropped the TSH he said he will do an endo referral and increase the levo to 150mcg.

Thank you for all your help and kind words!

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Well, then. You know where a good starting point is... don’t fight with yourself re what you need to do to strengthen your foundation towards feeling better. It may be scary on the front end but worth it on the other side (body crap) and trust me on this.... what you fear MAY happen if you decrease/change T to a more moderate dose if far more worse that what the ACTUAL result is.

Yes, the testosterone did increase my estrogen... at times as much as double.

The process of starting/completing the hyper prolactin path, especially when feeling so unwell, can be overwhelming. Set your mind to it and get it done, feeling SO much better to either eliminate or validate.

Regarding the body concerns (I hate labels... ending up carrying them for life when otherwise possibly outgrowing such thinking etc) Please address in whatever way is comfortable for you (online group, private therapist, etc) Nip it while you are young. I’d suggest approaching it from the fear standpoint (most crap, if not all, is fear based) what are you afraid will happen if x ? like stopping T then take a serious look at THAT ;) Lots of good reading on this stuff.

With many trials and more errors, I have learned the endocrine system is much more tricky than given credit. If just one thing is off, everything is off. Re your situation to try and stabilize one (Thyroid) while another one is unstable/unpredictable (Test/high dose, different dosing) with potential to affect others (Estrogen which in turn will destabilize your progesterone to estrogen ratio causing even more yuk symptoms) You see how difficult finding ongoing ‘feel good’ stability could be? Add in the unknown of your vitamin levels (some that thyroid meds absolutely will not even work if not in specific levels) plus potential for pituitary issue. That’s enough to make any one lose their mind. I know.

What works best for me is to look at the whole picture, note it, research it, prioritize... then address one by one as it makes sense functionally. Oh, and to be super extra patient :) Be well and most importantly, be kind to yourself :)

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I'm sorry you're feeling so ill. I was wondering if you've had any kind of head injury which may have caused your pituitary gland to go into overdrive. It happened to me after an accident, but it was several months after that the symptoms started.

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I did have a high speed motorcycle accident around 18 months ago. But no head injury was detected on the CT scan that was performed in the hospital.

If I had to guess, I would assume that my constant abuse of synthetic testosterone, over the years has destroyed my thyroid function. Although we do have several people in the family who are hypothyroid so could be genetical? Thanks for your input though.

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You wouldn't have to experience head injury as such, even minor whiplash can damage the pituitary gland.

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Wow very interesting! How would I go about getting this tested? E.g what kind of tests? I really didn't know this was even possible until now.

I think this is definitely worth checking as it was a high speed accident that resulted in extensive damage to my foot that needed surgery.

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Just as a 'for instance', a scan through this paper will give you a sense of what can arise from whiplash injury ncbi.nlm.nih.gov/pmc/articl...

Others here more knowledgeable than I, will hopefully advise more specifically on what testing is required, but there are a number and range of tests that can be carried out re pituitary and hypothalamus functioning, depending on what is suspected. Some blood tests can be ordered in primary care by your GP of course, whilst other more advanced interventions might require specialist involvement. Your first step is to discuss your concerns perhaps a little more stridently with your GP and ask for a referral.

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If you have any way to get in touch with that ER doctor who thought coma was only associated with hypERthyroid, send her this link.

medicinenet.com/myxedema_co...

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I kid you not I went through something so similiar although my circumstances were a little different as I’m usually HYPERthytoid and became HYPOthyroid due to overmedication which is when the real trouble began. I had similiar symptoms especially the random images and like conversations, but in my mind when I closed my eyes, walking around feeling detached...like I was in a dream or a haze.... the jerking as well. Most terrifying experience I’ve ever been through in my life and it’s nearly exactly a year on from the whole ordeal and I’m only just recovering mentally and emotionally from the experience. I can totally sympathise with you. I myself ended up in er countless times, ct scans, ecg’s doctor after doctor with no answers, just sent home with no findings. That’s what was the worst for me...the doctors not knowing, or trying to convince me it was in my head. I started writing my plans for my children for when I died because I was that sure I was going to die....my t4 was about what yours was around 6. Something when all this happened. I totally believe it’s due to being hypothyroid. Do you see an endocrinologist or just a gp? My endo was no help...he just said let’s see how things over the next few weeks while I was a shadow of my previous self and had lost my mind. I really do hope you get some answers. I’m here if you need to talk.

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Exactly like you said. When I woke up feeling like this I honestly believed I was dying. On the way to the ER I was thinking I was either slipping into a coma, or dying of heavy metal toxicity from injecting illegal steroids. I got a lot of reassurance from the ER visit but at the same time a lot of non assurance. Knowing that if I did slip into a coma the chance of it getting detected in the hospital would be next to none. Just the general attitude of the doctor, hey, we've found out its definitely your thyroid, so at least its nothing serious!"

I can only imagine your experiences when you had your multiple visits to the ER. The knowledge of the general doctors on duty is genuinely scary.

It does make me feel better hearing your words. Knowing that you had very similar symptoms and are still here a year later and making a near complete recovery! So thank you for that.

I see a GP and haven't been referred to a endocrinologist yet. Well I rarely even see my GP and its usually just the nurse practitioner as the receptionists at my surgery will rarely give me appointments with my actual GP.

Best of luck with everything :) thank you again

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I know it’s awful to go through but it’s nice to know that someone else has been through it. That’s why I had to reply. Just out of curiousity...what’s your diet and lifestyle like. Mine played a major role in my development of Graves’ disease I think and I had graves antibodies in the high hundreds when first diagnosed. Changed my lifestyle and diet round about a year an a half and have had antibodies under 5 ever since...aiming for zero but we will see! Currently I’m running slightly HYPERthyroid again and hoping it’s just due to severe stress as it has been in previous times. Stress seems to trigger mine every time but stress is unavoidable unfortunately.

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Reverse T3 , antibodies need to be tested, i would go on to NATURAL THYROID HORMONE as then your NOT RELYING on your body to be able to convert T4 to T3 because if your body is not converting Your T4 to T3 properly you will get TOO much REVERSE T3 and that's not good. TAKE MULI VITAMIN B SUPLIMENT ,it's Good for brain Lots of fresh vegetables and some fresh fruit and good quality fresh water drinks .NO coffee ,chocolate, or soft drinks. Best of luck it will take a little of hanging in there . Your not the only one who has to go through trying to work out what's right for their own body we are all different. I SUSSPECT T4 ONLY IS NOT RIGHT FOR YOU put pressure on your endercrinoligist to Try a T3 T4 combination or NATURAL THYRIOD HORMONE. You WILL make just hang in.

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I ended being diagnosed in A&E for hypothyroidism because I felt completely insane. Turns out, they told me I was not far off coma and heart-attack. It's definitely a terrifying place to be. Levothyroxine worked great for me for all of 30 days, then my body ached like crazy and continues to do so three years later although my levels are said to good. It's a bastard of a condition!

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Dude I’m 33 I know exactly how you feel, one thing from experience I can’t take an increase bigger than 12.5 my at the beginning my doctor started me at 50 mcg and try to raised it to 75 mcg a month and a half after and I had all your symptoms but the worst were full blown panic attacks with adrenaline surge, I’m at 137 mcg now but have gotten here only by increasing 12.5 at a time and still get sides but not as bad as 25 mcgs

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You sound severely under medicated and your TSH is showing that you are. It will take time for your body to acclimatise to the increased dose as you may have been taking too little for some time. Have your had your Vitamin D, B12, folate and ferritin checked? It's scandalous how little some doctors seem to know.

Karen

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