I have been on 125mcg of levothyroxine for about 16 years now and have just woken up to the fact that maybe a whole host of health issues I have been suffering, may be related to both the hypothyroidism AND the medication.
I have blamed a range of conditions on the symptoms (vestibular migraine being the latest/meniers disease) but the pressure I experience in my face, neck and ultimately ears really started when I was put on thyroxine, and includes tingling hands/head/arms etc and raging pulsatile tinnitus... but worst of all, my ears get pressurised to the point of becoming deaf and requiring hearing aids. I get massive head rushes and feel like my head is going to explode...
Couple that with constant fatigue and an inability to lose fat, despite a rigorous gym and diet routine... I have just realised that this is all highly suspicious, and before exercising another ENT specialist pointlessly, I feel it wiser to follow the endocrinology route. It never occurred to me that Levo might not be suitable, the doctors over the years made no mention and routine = complacency... but my life has been a genuine struggle with all the issues and I now feel that I need to urgently address this now obvious looking cause.
I am even taking beta blockers as a counter migraine measure, as the pressurisation in my ears often leads to bad vertigo, but now I am not sure if that is a good idea or necessary, if in fact my thyroid strategy is either not working well enough, is just wrong!
Thanks to this forum, I have had an epiphany, but would appreciate any comments, particularly if anyone else has suffered from cyclic pressurisation of the ears and head, leading to hearing loss (as if going up in a plane and not being able to clear your ears) and tinnitus...
Thanks for reading and any advice gratefully received
Alex
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Have you ever had a full thyroid evaluation? This includes, TSH, FT4, FT3. TPO (Thyroid peroxidase antibodies) TGAB (THYROGLOBULIN antibodies). Vitamin B12, folate, ferritin and vitamin D?
Not that I am aware of, but I am just about to go into the surgery to ask the secretary to print out all the blood tests I have had done there over the last year or so... I naively trusted the doctor to do the necessary, but will see what they did as soon as I get the info.. am thinking of using the private testing facility mentioned in this forum as well..
First of all, it has to be said that doctors know next to nothing about thyroid, and care even less. They have been taught in med school that all anyone with hypo needs is levo and a TSH test. And what they learn in med school is sacred! They don't want, and feel they don't need, to know anything else. So, your doctor would not have raised the possibility that levo didn't suite you. It would never occur to him/her in a million years!
However, there is no one type of thyroid hormone replacement that suits everybody, nor one dose. In an ideal world, doctors would give us the freedom to experiment with different types and doses and combos. But they don't due to their almost religious believe in levo! So, most of us here, do it ourselves! We experiment with T4 only, T4+T3, NDT only, NDT+T4, NDT+T3, T3 only...
To make things more complicated, there are different brands to contend with! People might find that only one brand of levo suits them, and the other brands all make them ill. Same with NDT and T3. Most of us aren't that difficult, but there is a lot of experimenting to do. But it's very rare that doctors support us in our search for the ideal combination.
So, you might very well have to go it alone - like so many of us. But, just one point I would make, first...
an inability to lose fat, despite a rigorous gym and diet routine...
First of all, are you sure it's fat? Because, very often, when we're hypo, our weight-gain isn't fat at all. It's mucin. Mucin is a sort of mucus-type substance just under our skins, that we hypos have in abundance. And it holds water! And no type of exercise or dieting is going to get rid of it. In fact, excessive dieting and exercising can make things worse. We need calories to convert. As you are on levo only, you are entirely dependant on conversion to get your T3 - the active hormone, levo being the storage hormone. If you use up all your calories on exercising, and you're not taking in enough in the first place, the first thing that is going to suffer is your conversion. So, you will, effectively, be making yourself more hypo, with low T3. Optimal T3 is the only way to get rid of mucin, so you see the problem there... And, if, as usually happens, you're under-medicated and/or have a conversion problem anyway... I leave you to draw your own conclusions.
So, good job you're going to ask for your records. You need to know exactly what's been tested and exactly what the results were. Because doctors often aren't very good at understanding blood test results - nor at doing the right tests! Ideally, your doctor will have also tested your nutrients, as well as your thyroid levels - vit D, vit B12, folate, ferritin. Because, not only will your body not be able to use the levo you're giving it if your nutrients aren't optimal, but low levels of nutrients will also be causing symptoms of their own. Fatigue could be due to low ferritin; tinnitus due to low B12; etc. etc. etc.
So, when you get your results, post them on here and let's have a look, see what's been going on.
Fantastic... thanks very much for that - I am aware of the exercise issue, which is complicated indeed - in fact I have been weight training with a PT for 2 years now and the lack of success in losing fat, whilst being professionally trained was one of the 1st alarm bells that went off, pointing to a problem matrix possibility that you have just shed a whole big heap of light on.. Initial research has made me ask:
1: Am I on enough Levo?
2: should I be taking T4 + T3 (and how to get this...)
3: Am I doing more harm than good with exercise?
4: What/how do I get/understand bloods
So I will indeed post results and ask more advice.. you are very kind
And you are very welcome. I look forward to seeing your results and being able to answer some of those questions.
Do you live in the UK? If so, it is your legal right to have copies of your blood test results, under the 1998 Data Protection Act. Do not let them make excuses and fob you off. Because, if they try, there are steps you can take to force them to hand the results over, and I'm sure they don't want to go down that route!
Okayyy... I do live in the UK and it seems that the Doctor is not averse to giving test results... but there is only one from Jan 2017 - showing just TSH level as "normal".. So,I think I need slightly better info than that.
I am also up for taking control of this as you suggested - starting with a comprehensive test, which I will ask the doctor for tomorrow morning - or any suggestions for a private test? Also, to experiment with different combinations of T4/T3 etc, what is the best way to go about getting the T3 and other suggested meds?
'Normal' is an opinion, not a result. And all it means is 'in-range', which is not the same as optimal! I think he can do better than that, if he wants too! I think he's prevaricating! It's very easy to say 'oh yes, I'm all for giving patients their results!' and then finding 'oops! that's all we seem to have...' Don't believe a word of it!
I very much doubt if your doctor will do all the necessary tests if he's only been testing the TSH for years! Below are details of private testing :
Yes, I agree that it does seem to be the default position with the GPs... "everything is normal, now go away..." However, just for sport, I am going in for the kill tomorrow and demand this long and complicated list of tests done, it will be interesting to see the reaction - I am planning to intimidate him(!) into referring me onto an Endocrine specialist if possible (get me out of his hair!)... and subject to THAT little start to the day, I will be ordering a blood test kit to get the full picture... will keep posting and will post results when I get them. Thanks again for your support, I feel better for just being able to form a plan of action and get some understanding of the strategy required to properly address this
Be very careful to whom you get referred! Most NHS - and a lot of private endos - are diabetes specialists and know little to nothing about thyroid. They can really mess people up. One of their favourite tricks is to ask patients to stop all thyroid 'meds' for six weeks, 'to get a base line'. Absolute rubbish, of cause, and causes a lot of suffering, but it seems to amuse them.
Email Dionne at this address for the list of patient-recommended endos. Then pick one, and ask for feed-back on here.
Well, you are under-medicated according to that. The aim of thyroid hormone replacement is to bring the TSH down to at least 1, maybe under. Yours is too high, which probably means you're not converting and your FT3 is low. Because your FT4 isn't bad. How much were you taking then?
Instinctively, I have thought that that might be the case for some time, but the doctor's never agreed... I will raise this tomorrow morning. Wouldn't surprise me if the doctor jumps at the chance for an easy fix... up the dose "go away" etc And then the tests will show...
He should only increase by 25 mcg every six weeks. So, that would take you up to 150 mcg. And, make sure you get retested after six weeks, so that you can re-evaluate your dose.
Serum 25- hydroxy vitamin D3 level (XaEQa) 36.9 nmol/L (with scales of recommended action: 25-50 nmol/L: VIT D deficiency consider replacement being applicable to this result)
Well, your FT4 and TSH are fine, but they don't mean much without an FT3. Your FT4 may be slightly over-range, but the question is, how well are you converting it to T3. If you can't answer that question - by doing an FT3 - then you really don't know much about your thyroid status. This is where doctors always go wrong, and they just can't see it!
If your antibodies are positive, then you have Hashi's, yes.
Your B12 is very low. I think your doctor ought to test your for B12 deficiency/Pernicious anemia. Your folate could be higher, too.
Your ferritin is good.
Your vit D is deficient, and you should be supplementing that.
Thanks very very much for your reply.. I am going to do a medichecks test next for FT3, I am seeing the doctor again later this month and will discuss this with him. What is a big surprise is that the doctors don't know about this T3 importance. My Doctor actually said "oh no they won't test for T3" even though he agreed with me that this should be done... I'll put him in an arm lock and see what he says......
Actually I am quite angry that not even a small, tiny, no-education-required, FREE piece of advice such as "you are hypo, why don't you check out this (or that) web site for any related info - you may need to make dietary changes etc)" is given. In fact I have never had a diagnosis of Hashimoto's disease in 15 years. Or been tested for it. WHY? if you have a DISEASE, isn't that exactly what Doctors exist for, to address? Or am I just being naive?
I am already adding B12 and Vit D supplements to my daily pill count - will up the B12 dose and see if this helps with my tinnitus any... which is bad at the moment - fullness in ear/deafness issue is up and down (mostly down). Will see what Dr says..
I am feeling physically very weird with all these changes, although I have made some radical medication/dietary changes since coming to this forum, so not unexpected really.
Surprise result from the doc was the hyperglycaemia, but I am sure that with all the dietary stuff changing (I have now given up the high carb, soya based vegan diet, and gone on a low carb, gluten free diet to address this) there's bound to be some weird results. I also can't help wondering if this might be related to being hypo, seeing as the metabolism is so controlled by the thyroid...burning sugars etc... or not well enough?
Once again thanks for your time, I don't where I would be without this advice, so much appreciated
Make sure the Medichecks test tests both FT4 and FT3, otherwise, you won't be able to see how well you convert.
Doctors know very, very little about thyroid - even less about Hashi's, and nothing at all about diet/nutrition. This is pathetic given how common thyroid conditions are, and how many people have bad diets, and how the two are connected, but everyone has their own agenda. So, whilst ideally, it would seem that doctors are there to diagnose and treat diseases, it does depend which 'disease' you have. If you have a heart condition or break your leg, I'm sure you'll be very well looked after. But, if you have an invisible disease or one caused by nutritional deficiencies, you're more or less on your own.
Don't go too low carb. You need some to convert T4 to T3. Low carb diets are one of the reasons people are poor converters.
Thanks again - I will certainly make sure I get the T3 checks... that's the main reason for the additional test and yes I hear you about the carbs - I am balancing hyperglycaemia with T4-T3 conversion!, so not tool low, or frankly anything too extreme.. I'll bother you again when I get the T3 results if that's OK
Gosh your story sounds so familiar. I've been on levothyroxine fo about 30 years and have suffered so badly with migraine. Beta blockers, ant depressants etc. I'm now 75 and am still struggling in spite of my health otherwise is good as I exercise regularly and eat healthily. Doctors are happy to hand out pills without ever looking into the whole body. I've been caring for my husband with dementia, who recently died, so I know have time to look after myself and am determined to investigate further. I do however find all the numbers associated with the tests confusing but I'll battle on. I'm starting by learning more about T3. This web site is excellent to exchange views and gain information. All the best!
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are common too, especially gluten. So it's important to get antibodies tested.
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need enhanced access to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can make nominal charge for printing but many will do so for free (£10 max and can not charge at all for anything after May 25th 2018)
Thank you for that info - I'm on it and will be ordering the blood test kit suggested from Medichecks tomorrow, immediately after the crushing disappointment that will most likely be my experience with the GP. My blood test results were given to me today and they are for TSH only and there is only 1 test on record, so not very helpful other than showing that I am possibly undermedicated on T4 and therefore likely not converting T3, which would explain a few things..
Update: I saw the GP just now, and to his credit, he listened, agreed with me that I was probably under medicated, and sat with me to custom order a full spectrum Thyroid test, which is booked for next week. He was even honest with me regarding the likely hood of the hospital agreeing to a T3 test... And we discussed the reasons for this.
I told him that if this turns out to be the case, I'll get a private test and ask him to refer me to endocrine consultant, which he agreed.
In the meantime he has prescribed An extra 50 mcg of levothyroxine.. Which is quite a lot, but speaks of how much he thinks I am under medicated..
One more question... I have noticed that the majority of the symptoms I have suffered from are cyclic, with onset from lunchtime onwards usually... I take my meds in the early hours of the morning due to work... So often by lunchtime, I've been working for 7 hours and might even have been to the gym..
Might it be a good idea to either :
Take meds in the middle of the day
Or take them throughout the day
Just take the larger dose as normal as it will 'last longer'
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And then the tests will show...
Suffering awful tinnitus anyone else with hypo experience this ?
Really loud tinnitus and headache since increasing to three grains Thyroid S
THYROID S
New Symptom or at least an exacerbation of an old one: pulsatile tinnitus.
Coming 0f Levothyroxine 
