I'm new so apologies if I'm asking terribly pedestrian questions. I am suffering with all classic hypo symptoms including fatigue, weight gain (that not even the LVCDs change at all now), insomnia, brittle nails, coarse hair/hair loss/, puffy face (puffy everything actually, it basically feels as though I'm wearing my body), abdominal distention (a permanent extra solid 10 inches across my torso that not even furesomide fixes), mind fog, freezing most of the time, diminished sense of smell, and DSAP that appeared a few years ago and as its not something that runs in my immediate family and I'm very SPF conscious is likely to be a immune response.
I was diagnosed with Pernicious Anaemia in 2015 when my ferritin dropped to 10. Then PCOS in the same year due to insulin resistance and LH:FSH ratio (cysts not found). Anaemia, hypothyroidism, hyperthyroidism, cancer (breast/skin/pancreas), and heart issues (underlying cause unknown) run in the family.
I have been taking 2x322mg iron, 1 x 50ug vitamin D, 100mg of B12, 1-3mg of Metformin, I wear an Everol 50 patch with progesterone every 2-3 months for 10 days for the last 2 years. I don't seem to be absorbing anything anymore.
I have high reverse T3 and FT3:RT3 ratio well below the range, T4 & T3 are mid range but nowhere near the top 75% of reference range which is often meant to make a difference. Magnesium and free Testosterone are high. Antibodies are present, but not high so not Hashimotos or Graves. Cortisol is under control so not adrenal fatigue. Insulin is getting worse not better despite diet, exercise (less since the permanent bloating makes putting my shoes on a challenge in itself) and metformin. LH:FSH is getting worse despite treatment. I have been to the NHS doctor for help (hee hee hee) and I've been to and NHS endocrinologist and a private endocrinologist a specialist who is highly reviewed and recommended. No one will help.
Is there anyone that has this sort of euthyroid sick sort of Hypo? Or something similar. What did you do? Who did you talk to? I did all the right research on the specialists and am still getting nowhere. Please, I'm just so desperate.
All Test results below.
08-2016 08-2017
TSH: 1.41 (0.34-5.6) 2.64 (0.27-4.20)
Free T4 12.8 (9.0-23.0) 18.22 (12-22)
Free T3 3.3 (2.5-5.7) 4.88 (3.1-6.8)
Reverse T3 38 (10-24.0)
Ratio 8.36 <12 Low, >15 Normal
TPO 7.3
antithyroidglobulin <10 (<115)
IgA 1.75 (0.8-2.8)
Tissue IgA 0.5 (0.0-10.0)
Erythrocryte 13 (0.0 - 12.0)
sedimentation rate
HbA1c 39 (20.0-41.0) 33 (20-41)
Magnesium 1.04 (0.6-1.0)
Vitamin D 66.6 (70-150) 86 (50-175)
B12 180 (>250)
Ferritin 50 (10-120) 52 (20-150)
LH 7.5 18.5
FSH 5.1 8.5
SHBG 103 (30-100) 95 (pre menopause 26.1-110)
Free Testosterone 0.051 (0.003-0.39)
Insulin 87.9 (<88) 104.4 (0.0-88)
Thank you!
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Wildrl
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Your B12 is still terribly low. Isn't loss of sense of smell one of the symptoms of B12 deficiency? Could you check this out with the pernicious anaemia forum on healthunlocked or the Pernicious Anemia Society UK website?
Thanks Nanaedake - i shall have to give that a go. The challenge is that I'm taking all the right supplements and they just aren't going in (e.g. iron moved up 2 points in a year) . I've tried bigger doses and changing brands and its not working. I was under the impression that hypo people often struggle with the right stomach acid to break down and absorb the nutrients, which i thought this might be a logical place to start down the rabbit hole!
Have you been tested for Celiac disease? Many people with Hashimotos find going gluten free helps even if they haven't got celiac disease and I wonder if because you have antibodies even though not Hashimotos it might help you too? Would it be worth a try? There is some advice on here about improving stomach acid. Not sure who it was recentlly that gave good advice but you could post another question directly about absorption issues and stomach acid and you might get a response specifically on that topic.
B12 requires high stomach acid to break down and digest. As do many others, such as Iron and D3. Definitely look into some sort of digestive enzyme support (I find the ones with ox bile work best for me personally). I would also recommend using a zinc assay to determine if you're deficient - because that dramatically affects the sense of smell and is critical to thyroid health.
Thanks Knitormiss. I will start shopping around for the enzyme. Ive changed my GP because the last one couldnt diagnose a bacterial chest infection and i had to use push doctor. Hopefully the new one might be a bit more willing to run some blood tests for things like zinc.
Zinc assay is not a blood test. And blood tests for zinc are much like electrolytes, they don't always show well. The zinc assay test (the formula is also used as a supplement if deficiency is shown, generally) - has the zinc tasting like water if you're deficient all the way up to horribly bitter if you're not, etc. I've not used this method or brand, etc., but this describes the general way to use it as a test - and why certain labs don't work well as a "big picture" view....
You may be taking the right supplements but nowhere enough.
Your B12 is below range, so 100mg will be absolutely no use. Have you been tested for Pernicious Anaemia? Sorry just read you have been, so why is your B12 so low? GP treating?Did you have Folate tested?
I don't understand the two lots of numbers with different ranges for ferritin and Vit D? I think they both need to be higher.
Maybe the HRT is affecting the testosterone, hopefully someone else will comment.
RT3 is treated with T3 only, again hopefully someone will comment.
You don't say what thyroid medication you are taking?
Hi silver-fairy. I'm not on any thyroid meds. So far no on is willing to look at the high reverse t3 despite test results that suggest I'm well over range and having my TSH ore than double between the tests. The PA test was slightly unreliable but it runs in my family and all my bloods (not listed) point to it. GPs are not interested in any of the low vitamins so I'm just trying to buy the best based on reviews to see if anything works. ANy advice welcome!
looks like you have worked hard to get answers.i would want an abdominal,upper and lower ultrasound and your Gp to order that.i think you need to know that the 10 inches isn't something else going on or fluid in your tummy.worth getting them to scan your ovaries again.
Thanks, Melville999 . Unfortunately, as I am overweight I've struggled to get anyone to refer me to anything other than bariatrics, even though I had the same problems when I was thin. The specialist I saw today has sent that request to my new doctor., so hopefully they'll help. I had this problem before for about 10 months which suddenly stopped - which I don't understand....! And this time around (2 years later) it's been 4 months so far.
there is stuff on the internet about reverse T3 dominance that might help explain what's happening as the reverse T3 stops normal T3 and T4 from working.you may find answers if you put reverse T3 dominance in a google search.
Well that's what I thought. I was just hoping that someone could point me towards a clinic (as you can't name doctors) that believes in reverse t3. I thought the specialist I saw had great credentials but when I went said that he wouldn't have diagnosed me as PCOS because I don't fit the Rotterdam criteria and said the same because I'm not primary hypo. I just need someone that looks at all the info together.
the gluten free suggestion may help as noted by someone very helpful above.but get coeliac excluded before you go gluten free.And some of the binding compounds in gluten free cakes biscuits have been found to be obesity inducing.so of the substitute foods I would avoid things with lists of stuff Your granny wouldn't recognise' that look like a chemistry experiment.
There are about 6 different tests for Coeliac. You only had one. And you can test negative and still have it. They can do a scope test to verify by tissue. But you have to actively be consuming gluten in quantity for the tests to return positive. It's often easier just to cut it and see how it goes.
I live in West west London. I saw a specialist in West London, who has fab reviews, but who is looking for primary hypo and I think that currently is secondary. My mum is out and out hype (TSH was over 7 I think) and her GP still didn't want to diagnose. I need someone to advise at specialist that believes in newer research as when I call people no one answers the question.
I'm sure it is,I didn't read them too closely.apologies.you aren't exposed to some environmental trigger to all this are you?,dry cleaners,pesticides etc?
Not that I'm aware of. Only London standard pollutants! Can't afford dry cleaning! In all seriousness I genuinely can't think of an environmental factor. A lot of my symptoms started over 17 years ago and I've moved around a lot. I'm now 33.
Your B12 is WAY too low - you want it at least 500 but preferably around 800-900. The supplementation you're doing is not sufficient and most likely a waste of money as it's clearly not doing much for you. Low folate is usually seen with B12, so you may need to properly supplement both together as they affect each other and I've heard you can't raise one properly if the other is still low. You should have your folate tested and supplement accordingly.
To deal with B12 that low, you either need to push your doctor for injections or go sublingual - I managed to get my surgery to do loading B12 injections, and then 3 more spaced 8 weeks apart but they then got difficult and refused to continue them. I've been supplementing with sublingual spray ever since and it works just as well as the injections and is perfect for those who have mal-absorption as it doesn't rely on your stomach.
Your ferritin is not optimal either.
If you have vits and minerals that aren't optimal, it will affect your thyroid hormones, and most of all, your reverse T3. I managed to get my reverse T3 down and my free T3 up by supplementing vitamins/minerals properly and having repeat bloodwork done (had to go privately) to monitor things, reducing stress, and I also take a low dose of NDT.
Your adrenals also have a huge effect on your RT3, and you'd be wise to do a saliva cortisol test that includes samples taken at least 4 times per day.
I think the cortisol doesn't look too bad although a bit high in the morning - do you have extra stress/anxiety in the morning or poor sleep?
I am sure there must be several B12 brands available, but I use one by Better You (I also use their high dose vit D3 spray because my vit D was really low). They both taste great, and I spray them under my tongue and hold them there for a few minutes. I use naturethroid NDT, but I'd suggest you get your vits and minerals sorted before trying thyroid hormones. Have you had your selenium checked? I think it plays a huge part in correcting RT3 and so you may want to supplement it too if you are not at the top of the range.
I usually sleep badly to be honest. I've just put an order in for additional supplements and added the request for selenium to my list of tests to request!
Yes, I think irregular and poor sleep and going to bed late affects RT3, and I also think failing to eat something as soon as I get up causes me issues. I am a night person and spent many years going to bed in the early hours and getting up late and have also fasted a lot in years past to try to lose weight. That included going without food for most of the day and then eating something small in the evening. This wrecked my metabolism, adrenals and nutrients, thus leading to a very sluggish system, and high RT3. I still haven't found the perfect balance because my diet is not the best, and my stress is always high (own business).
It's a long road, and much of it you will need to travel on your own because the doctors don't treat most of the issues that are likely to be the root of your problems and certainly don't look at the whole picture.
In case you haven't yet read this advice, if you're going to supplement iron, get a full iron profile first and take iron with vit C and zinc, and don't take anything else within a couple of hours of it as iron inhibits absorption of many other supplements.
Fixing the sleep and correcting the deficiencies, particularly the B12 will go a long way towards making you feel better and allowing you mental and physical clarity to address the remaining issues. Getting that RT3 down may well allow the FT4 and FT3 correct themselves a bit more without actual thyroid supplementation.
Thanks again. I already have to supplement with iron because mine dropped below the reference range and i usually have a drop of orange juice and avoid dairy. I don't really go to bed late, I just cant sleep - tried all sorts of relaxing strategies and removed blue lights etc. just cant shut my brain off. Thanks for all your advice and i will be taking it on board.
I totally understand it being hard to switch your brain off, I have the same problem. Honestly, properly addressing the B12 will probably help with that too. Amongst the whole host of issues caused by low B12 are depression, anxiety and other mental issues, and so correcting that may well help with your sleep.
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