Vitamin D 73.3 nmol/L (adequate) No range but it says 'Total vitamin d levels above 220 are considered high.'
The previous test showed I'd gone quite hypo, I think because I was on ldn capsules that for whatever reason were completely ineffective. I'm now on sublingual drops and they're working. I'm on 75mcg levo + 10 t3.
I've been supplementing iron, folate and d and am back on my b12 injections. I still feel absolutely shocking - fatigue, cognitive fuzziness, agoraphobia - and I need to do something about it. Any thoughts? I'm just desperate for a plan B to keep me optimistic.
This is what I'm considering:
1) Adrenals. I've been here before (I was treated w dhea and various supportive supplements to no avail) but maybe it's time to go down that road again. I'd need to know how to start (eg what tests to get) so feel free if you have any ideas.
2) Maybe it's time to give ndt another look? I tried self-treating on Thyro Gold a couple of years ago and went very hypo. I'd have to keep a better biochemical eye on things as I'm not good at discerning high symptoms from low.
3) I'd love to give it all over to a doctor or other practitioner to figure out how to make it better but I've had no really overwhelming recommendations. Feel free to pm me if you know of someone.
4) The one time I felt substantially well for six months my t3 went over range. Maybe instead of just tweaking my levo I need to raise my t3 as well? I'm wary of being overmedicated but something's got to give. I can't live like this forever.
Thanks folks. This group is a lifeline when I feel like this. x
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puncturedbicycle
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I'd tweak the t3 but other more experienced people might have better ideas. Your t4 is already high in range, and as you said yourself you feel better with higher t3. You still have some 'wriggle room' to remain in range.
I have never regularly taken more than 10mcg t3 (except for the one ill-fated time I got terrible palps), just raised and lowered levo. I feel I need another test after my ldn fiasco just to see what my levels are like now. If everything looks good I could try an extra quarter of a tab a day.
I skipped an injection before the tests to see how my numbers would react (I was off all supplements before a colonoscopy and then wanted to get a base level for my own private bloods). I only do them monthly so that was possibly two months between injections. My levels are always shockingly low when I'm not supplementing, thus the injections.
I'd deffo recommend si for anyone w symptoms. Massive doses of oral supplements did nothing for me but raise my bloods.
This is not related to b12 tho. It has never given me energy (even during the loading dose days) just dealt w neuro symptoms.
I can do anywhere between London and W Dorset. Interested in your recommendation thanks.
For your B12 to go so low so quickly indicates a problem somewhere - not sure where ! Folate works with B12 in the body and helps to hang on to B12 longer. Do you have good levels/supplement ?
I suggest going for B12 injections much more often. I was once told by Martyn Hooper from the PAS - that it takes months for B12 to clear and that would make testing unreliable.
Have you had other testing - like MMA - Homocysteine - PA antibodies ?
Yes, am supplementing folate, though I was off all supps at this time.
I can do injections more often but having done a loading dose (three weeks of injections every 48hrs) I do not believe it makes a difference to my energy. I do subcutaneous si (don't fancy intramuscular) so it may be it hangs around for less time. But I agree, it must be going somewhere. Have not had testing as I don't want to just do loads of random tests. Is there any point in testing if I'm already injecting?
Haven't had the other tests. Again, very willing to formulate a plan, but I don't want to just do random tests if you see what I mean. Will put them on my list!
Best to ask on the PAS forum about testing for MMA and Homocysteine being affected by B12. Have a feeling one is and the other isn't Cannot quite remember - sorry .....
Ruthi , would you please pm me the doctor recommendation?
puncturedbicycle 's comment, "I'd love to give it all over to a doctor or other practitioner to figure out how to make it better" -- it feels like we ought to be able to do this!
BUT I would counsel against even the idea of handing over your long term well being to anyone! To me it seems psychologically unhealthy to abdicate responsibility for my well-being to anyone else. I want a good doctor because they hopefully have better knowledge and experience in this field. But ultimately it is my decision, and my responsibility.
Oh yes, just to clarify, I absolutely agree. We must always be responsible for our own health. But I am surprised at how challenging it can be to find practitioners to work with on this. When you are experiencing crushing fatigue, as puncturedbicycle describes, it can seem really difficult. I hope you are feeling better soon, pb.
Ok, also going on the list. I did once have progesterone/testosterone cream (so I assume at the time I was a little low on t) but it didn't help.
May I ask what an iron study will tell me? Is that to see how I'm using the iron in my system? I am always anaemic and now having heavy periods for the first time in my life so keeping my iron up is a constant struggle.
Am self-injecting methyl, but subcutaneous not intramuscular. I've been told by someone from the B12D support group that it shouldn't make a difference. It has never made a difference to energy but it is deffo helping neuro symptoms. Even b12 patches did nothing for any of that.
Was strictly gf for a year and it made no difference to my antibodies or energy. That doesn't mean I wouldn't do it again if I had evidence it was helping, but when I tried it it did not help.
Yep self injection every day B12 methylcobalamin worked for me. Was told it would turn my urine pink if I had too much...well it never has!! I definitely feel dreadful without them.
Saliva Adrenal Test is best way to get cortisol and dhea checked.
If you have ever had a head injury it could be worth looking at Pituitary Damage it can takes years to manifest itself.
I have Hypopituitarism(lacking in pituitary hormones) due to TBI.
Wow, that is interesting, never thought of head injury. I've had a few minor smacks on the head but nothing like tbi. No concussion even. I have had a number of whiplash injuries (it has been suggested this could be related to thyroid issues) but no head trauma was involved.
May I ask if my adrenals were treated and I still felt awful is it worth doing again? I was treated w dhea for some time - this spans my period of well-being as well as my subsequent hypo crash - and I know there were cortisol issues (though I only had a blood test). I also tried CT3M and that didn't help. I feel certain my adrenals are an issue. I can avoid stress for England because even small stressors are like an explosion of adrenaline for me.
But I don't want to seem negative about suggestions just because I've already been down that road at least part of the way. I understand that it can be a bit like the planets aligning and if it doesn't work once it may require other things being in place so it can work at a later date.
Worth ruling out Pituitary problems by asking for referral to NHS Endo who knows about Pituitary. Just Google Pituitary Specialist in your area!
There are many causes of Pituitary problems and sometimes they don't can't find the cause.
The Pituitary regulates sex hormones(testosterone/progesterone) thyroid and adrenals, growth hormone, among a load of other stuff we don't even know about. Apologies if you already know this!
If you have already seen an Endo then maybe they have tested you already.
Oh forgive me but I will eat my effing hat if they agree to refer me for pituitary problems. I assure you the endo never tested me for it. They were obsessed w myasthenia gravis. Yeah, that would be a private endo doing any of that!
I am wondering why they have not tested you for severe adult growth hormone deficiency or they did and didn't tell you!!...having very weak muscles is one of the main symptoms. One test they do is blood test for IGF-1(Insulin growth factor) which if it's low can be an indicator of AGHD. But in a lot of cases IGF-1 is normal because it's affected by other things like high protein diet this alone can affect IGF-1.
My IGF-1 was "normal"(...I hate that word when an Endo uses it)!!! But I had the Glucagon Stimulation Test and then the Insulin Tolerance Test and results came back as severe growth hormone deficiency.
So I am now on growth hormone injections every day.
It only took 14years to figure what the problem was!lol
How interesting! May I ask if there are any growth issues in your history?
I am quite tall - ? -- but maybe that is just a clueless thing to say - ? I must admit I have no idea about any of this pituitary stuff. I must do a little reading. How brilliant of you to have figured this all out though! I'm a bit in awe.
I think the myasthenia thing was a matter of someone having been on a day course. I don't know that I had any actual symptoms beyond the usual feeling a bit feeble and having little muscle tone associated w uat.
Well I am 5"1'!! So there could be issues.lol!! But mine is actual damage to the pituitary itself occurring when I was 44.
Lots of people are going undiagnosed with Pituitary damage...but then again others are lucky to find a doctor who thinks outside the box. It is seen a lot in people who play contact sports, or in my case riding accident, cyclists who go over their handle bars, no matter whether you are wearing head protection as the brain is shaken inside the scull like a jelly!!!
Some people suffer accidents as children and symptoms will not appear until years later.
There is an article on line if you Google CFS and head injury and it will bring up a the subject of Hypopituitarism and head injury...that is how I found out about my problem. I took the article to the GP and I got a referral to Endo Pituitary Specialist.
I did in fact go over the handlebars when I was about 15! Got a black eye from my head hitting my arm as I went over and have scars on knees and elbows from road rash.
Really recommend trying gluten free, but don't go cold turkey. Cut down gradually over 2 weeks to allow your body time to adapt. You could also try cutting out sugar and reducing other grains as these are also inflammatory, getting more of your calories from fats which are anti-inflammatory.
The Paleo Autoimmune Protocol cuts out most inflammatory foods and helps to identify any specific food sensitivities:
Looking at the thyroid bloods, you've got room for an increase. The rule of thumb I think of is that the freeT3 should be in the top third, so yours is still a little low.
If you're looking for ideas of things to try, dropping the Levo altogether and going 100% T3 is an option. Not because of anything in your numbers, but just because it works for some people.
I've just been reading about thyroid resistance, and I think I'm going to follow it up further. People hardly ever say this, but the treatment requires bloods going over range, and when people mention e. g.Dr Lowe having his enormous T3 dose in the middle of the night, his fT3 was likely enormous, too.
I'm not too confident about it as I've only just started looking. But if you feel noticeably better with over range fT3, maybe you are better off that way. Maybe it's even worth the risks of bone trouble, etc, depending on how disabled you are at present.
Thanks SilverAvocado. I did once try to drop the levo entirely to sub in t3 but it made me straight up fuh-reak out w anxiety so badly I never actually achieved it. Since then I wonder if low/falling t4 is something to do w my history of anxiety.
It's strange, but when I had similar results to yours on NDT (although my FT3 was a tad higher), I felt terrible. On T3 only, with the same FT3 but under range FT4, I feel quite good. Everything else seems the same.
Low B12 could very well be the problem. If mine isn't >=1000 I get eye tics, loss of balance and generally feel awful - I probably don't absorb it very well and that could be your problem too. I take 5000iu a day all the time (too cowardly to self-inject). I might be wasting money, but it drops like a stone if I reduce the dose. It seems to affect me more than my permanently low ferritin (you don't list your ferritin level).
Could be adrenals - Geneva saliva test is a good starting point. If you have low cortisol, you usually lose appetite a bit and tend to want to throw up if you overdo things (also headache)
That's interesting to hear about you feeling better on all T3. I similarly feel a lot better on NDT than I have on other combinations. Which I guess shows that it's worth trying all of them out.
Definitely. Not everyone is the same. I felt better on NDT than nothing, but much better on just T3 (also tried NDT + t3). My only explanation is that perhaps most of my ingested T4 turns into RT3 (or just sits around doing nothing) for some reason, so my bloods look great but I feel appalling.
That's very interesting, to hear what your theory is. I think mine must be problems transporting and using the T3 in cells. So it makes sense that the big molecules in NDT that have already been attached to some of the things they need to be attached to work better for me.
We probably have quite different things wrong with us.
Sorry all, not sure why I left out ferritin, have added it to the list. At the time I had been off all iron for months for a colonoscopy, and didn't want to go back on it before the bloods (which took time to arrange etc). Before that I had been supplementing 2x gentle iron or similar (I think that's 40 or 50 units a day). Back on the iron now.
Have developed unusually (for me) heavy periods (menopause I assume) so that may be playing a role, but this fatigue predates that. I am always anaemic - have had results of 19 before - so I'm sure it isn't helping.
Wanted to add I'm so grateful for all your ideas and support. Even when I'm feeling a bit hopeless and like I've tried everything it is all grist for the mill.
Sorry to leave you hanging above, I'm on the west coast of the US. I've read all of the above and think you have a lot of health issues going on.
I asked about the iron because low iron and B12 can happen with gut damage in celiac disease. Your thyroid antibodies are quite high and there's some similarity with how your body looks at a gluten molecule and a thyroid molecule. I know of several people who've had antibodies come down by addressing food allergies and replenishing nutrient deficiencies. In addition to gluten, you may have other food allergies as well, which could be why you didn't improve by just going gluten free.
Get your hands on The Food Intolerance Bible by Anthony Haynes. It's got a lot of self help tests to sort out allergies and a whole host of gut problems - SIBO, candida, parasites. It's yucky, but I suspect your gut health is at the root of your problems.
Going on an anti-inflammatory Paleo Diet with a good amount of high quality animal protein, healthy fats, and lots of vegetables would likely be helpful. Also take a good probiotic every day and digestive enzymes with meals.
Next, get a handle on your hormones. Look up Dutch test.com. it's the most comprehensive hormone test on the market and easy to mail. Periods that heavy aren't good - something us wrong. I wish I'd gotten a better handle on mine 10 years ago and maybe I could have avoided stage 3 uterine cancer at a young age.
The DUTCH will give you all the hormone metabolites and tell you what they're doing, including cortisol at 4 times of the day.
Then, have you been tested for heavy metals, like mercury, lead, etc.? They can foul you up. Hair or provoked urine tests are best for chronic exposure, blood will only tell you recent exposure. I'm asking because your methylation is likely low due to your low B12, causing inability to detoxify and heavy metals can mess up a lot of things.
Then there are your nutrient deficiencies. B12 needs other cofactors to work properly. Get on a high quality multivitamin, like Thorne NutriFem, fish oil, and a good quality B, like Thorne Stress B or similar.
It's a process to tease out a multi headed beast of a health problem, but the only way to get better. It sounds like you're in a frustrating situation but asking the right questions. There's a bit more that I can share if you want more info, so write me if you want more, when you're ready.
I've had a similar issue, after starting to feel better from self-medicating with NDT & T3.
Clutter suggested upping my T3, which starts tomorrow. Also adding more iron & B vits, then if there's no improvement, I'll try B12 injections.
I took Thyro-Gold last year, then tried again this year, after I'd got used to WP Thyroid, & the same bad reaction within hours. Just given the rest of the bottle away.
I'm sure you'll get lots of get well ideas from the excellent people on this website!
Yes, I just couldn't get on w TG, though I think it was because I can't distinguish between high and low symptoms so I went very low. Ugh, I lost so much hair just after it had grown in so luxuriantly after my t3 success.
Do give injections a go! If it hadn't been for someone very helpful on the b12d website I would never have done it. If you settle for subcutaneous it's as easy as can be. The hardest part was finding somewhere to get rid of my sharps bin, so if you can get that figured out early it will help you later on.
I have more or less got rid of my tinnitus and other things to do w skin sensitivity have improved. I had two numb toes for years and never connected it to b12. All the oral supps in the world - up to 7000 units a day - didn't help at all but injections helped within a year.
A tiny ammount made my lips prickle. Not a pleasant sensation.
Do you take your temperature & pulse?
I'm not having much luck with hair, though I've a few more eyelashes & two long eyebrow hairs. I suppose that's a good sign.
I've just ordered a large bottle of B's, then I'll try injecting if no improvement by when they run out. I'm absorbing some, according to my blood tests, but still lower range B12. I have a few sharps boxes for Acupuncture needles, but won't need the first emptying for years. I've read local clinics & pharmacies will take them.
My skin is better, especially sun tolerance since taking thyroid meds, but my tinnitus has worsened.
I do take my temp and pulse but they don't change all that much unless I'm very overmedicated.
Just fyi, the thing about local clinics and pharmacies taking sharps is a vast generalisation (which I had heard as well).
The local drug and alcohol services recommended pharmacies that do needle exchange but the pharmacies I tried *only* did needle exchange, for which you have to register, and even if had registered they wouldn't take the bin I had (they only take their own bins). My own council wouldn't do it because I had no arrangement w my gp, and the surgery wouldn't refer me for the council service because I had no script. So I would have a hard and fast plan if I were you. I almost resorted to leaving it in the toilet at the surgery.
I rang the local medical centre near our holiday home and they said they'd take it. They gave me a new bin which gives me hope for when I need to dispose of it (hopefully they will recognise their own bins) but it does take the better part of a year for me to fill one, so who knows what their policy will be then.
My temperature has gone up, but only just above 36 degrees, & my T3 levels appear to show that I'm not overdoing it ~ uped my dose again this morning. I'm pleased that my pulse is now palpable, as I didn't seem to have one, & it's certainly no faster!
What a faff with the sharps bin. It'll take me a year or two to fill mine, which I'll worry about then. A nuisance that the end of a syringe needle will take up so much more room than an acupuncture needle.
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Results with T3 and 50mg T4
Results help please....specifically T3 conversion problem?
