I'm having a bit of a hard time mentally and seem to have lots of little niggling symptoms that I'm not sure are related to the thyroid or are stress/anxiety related.
Briefly, I gave birth last March, noticed a lump on my neck in the Spring and had a scan and biopsy. Scan showed a 'patchy' thyroid. Biopsy inconclusive so had half of my thyroid removed at the end of September and started on 50mcg levo as bloods showed raised TPO and diagnosed with Hashimoto's. A couple of weeks after the op I noticed I have developed patches of vitiligo. I feel really anxious that my body is falling apart and I'm going to develop more and more AI conditions.
Symptoms- I've had awful panic and anxiety, stiff and crampy fingers, waking up in the night with tingly/numb/pins and needles on arms and fingers and occassionally around my knees. My face also occasionally feels 'cold' in patches but isnt cold to the touch. The arms symptoms seem to have eased slightly as I try to keep everything straight at night and as I have started with magnesium lotion before bed. Also feeling cold and dry skin.
Latest bloods - taken 11.30am (earliest I could get) and didnt take levo within 24 hours of it. Had a yoghurt and water beforehand as Im a fainter so didnt fully fast. Will do this next time with private bloods and get them done earlier.
TPO >1300 [<100]
TSH 1.6 [0.2-4]
Serum T3 1.6[0.9-2.5]
Serum free T4 16.3 [10-20]
Vit D 83 [50-100] currentlt take 1000iu daily
Folate 21.7 [5.4-24]
Ferritin 25 [10-322] - in June this was 80 but periods have since returned heavier and more frequent than before pregnancy.
Vit B12 479 [211-911] this has increases from 320 in June. Not taking supplements.
Calcium 2.22 [2.2-2.6]
Any comments or advice? I think I need a B vit complex but should I take separate b12? Will also restart Spatone iron. I am thinking of taking high strength evening primrose oil and starflower oil as the anxiety before my period is overwhelming - I dont feel in a rational mind at all. Would these affect the thyroid or levo at all?
I have a coeliac test next week but will cut gluten out after that regardless. I would really like to try to reduce my antibodies.
Sorry for such a long post! Just wanted to get everything down ☺
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Fredthedog
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I think you need to increase your ferritin because of your heavy peroids. I ate pate twice a week and took Spatone to bring my levels up. When I had heavy periods years ago I took Tranexamic Acid tablets which my doctor prescribed which did help.
Yes I've always struggled with ferritin - forgot to mention I am vegetarian so it has to be supplements sadly. Will look into Tranexamic Acid if I keep struggling, thanks.
The Tranexamic Acid slows down the flow and you only take it when your period is due. I took them for about a year and they really helped. Perhaps just taking Spatone will help but there are vegetables that are rich in iron that you could incorporate into your diet.
Hi. Sorry you’re having a bad time. Tough especially when you have little ones. Hope you manage to feel better soon.
I just wanted to say that I have taken tranexamic acid for about 6 years now. Initially I thought it was a waste of time but when I went on levothyroxine it really seemed to work. It just stops the flood and the panic that you can’t go anywhere or do anything for the duration. Don’t get me wrong it’s still a curse 🙂🙃 but it does help. Ask you gp and you’ll be able to get on a repeat 👍🏻
have lots of little niggling symptoms that I'm not sure are related to the thyroid or are stress/anxiety related.
More likely that both the niggling symptoms AND the anxiety is related to your thyroid. Anxiety is a number one symptom for me when I'm under-medicated.
Latest bloods - taken 11.30am (earliest I could get)
Rather than accept a blood test that late in the day, it would be better to postpone the blood test until you can get an early morning appointment, because doctors only tend to look at TSH, and yours is say 'I'm perfect!'. When, had it been done at 8 am, it would have told an entirely different story.
Serum T3 1.6[0.9-2.5]
43.75%
Serum free T4 16.3 [10-20] 63%
Looking at those results, your conversion isn't brilliant. The two results should be closer together. But, you're probably under-medicated because your FT4 could be quite a bit higher - up to, say, 80% - which would bring your FT3 up a bit. Whether or not it would be high enough to make you well, remains to be seen. But that low FT3 would account for your lingering symptoms.
Vit D 83 [50-100] currentlt take 1000iu daily
Are you also taking the cofactors of vit D? Magnesium and vit K2-MK7. Vit d and magnesium work together, and taking vit D without magnesium will deplete your magnesium - which is probably pretty low, anyway.
Taking vit D will increase your absorption of calcium from food. Taking vit K2 with vit D will make sure that that extra calcium goes into the bones and teeth, and doesn't build up in the soft tissues.
Vit B12 479 [211-911] this has increases from 320 in June. Not taking supplements.
You say you're vegetarian, so you should be taking supplements. You can't get B12 from vegetables. And, personally, I would want my B12 a lot higher than that. Do you eat eggs? They're quite high in B12.
I think if it were me, I'd take 1000 mcg sublingual methylcobalamin daily, and a B complex at the same time. Your folate is good, but all the Bs work together and need to be kept balanced. You want a B complex with methylcobalamin and methylfolate.
I see you're aware of your ferritin problem.
I am thinking of taking high strength evening primrose oil and starflower oil as the anxiety before my period is overwhelming - I dont feel in a rational mind at all. Would these affect the thyroid or levo at all?
As long as you take these at least two hours away from your levo, they shouldn't have any effect. Thyroid hormones should always be taken on thier own, on an empty stomach, one hour before or two hours after food, two hours away from most supplements/medication, and four ours away from oestrogen, vit D, iron, magnesium and calcium (should you need to take it). Iron should also be taken at least two hours away from everything else - except vit C, which aids absorption and helps avoid constipation, and needs to be taken with iron.
I would really like to try to reduce my antibodies.
Why? Reducing your antibodies won't affect your Hashi's, it will still be there. The antibodies are not the disease. Hashi's is for life - the life of your thyroid, anyway - but antibodies come and go.
Having said that, a lot of Hashi's people are gluten sensitive, even if they don't have Coeliac. So, going gluten-free can help them a lot with symptoms. But, if you're going gluten-free with the sole aim of reducing antibodies, you're likely to be very disappointed.
I do eat eggs but will order the B vits and start those as soon as I can.
Will also order the K2 or get a combined vit d and k2 tablet. Is it enough to just use topical magnesium?
It probably sounds silly, but I don't like the idea of all the errant antibodies in my blood/body!
I will definitely get the next blood test as early as possible. I had to wait 4 weeks for this one and I don't currently have the resolve for fighting so I just went with it!
Will also order the K2 or get a combined vit d and k2 tablet. Is it enough to just use topical magnesium?
Probably not. But, how much magnesium do you think you get out of it? You really need to be taking about 300/3501
It probably sounds silly, but I don't like the idea of all the errant antibodies in my blood/body!
Well, it doesn't sound silly, but you have to remember that all antibodies are there for a reason. 'Errant' isn't really a word I would use to describe them.
Your thyroid contains the proteins Thyroid Peroxidase and Thyroglobulin, which assist with the processes of making thyroid hormones. When the immunes system launches an attack on the thyroid, not only do the dying cells leak their hormone stock into the blood, but also a certain amount of these two proteins. So, the TPO and Tg antibodies come rushing along en masse to clean them up, because they're not supposed to be in the blood. When they've done thier job, the antibodies reduce in numbers again.
Thanks so much for this explanation - it makes sense and I probably shouldn't be so concerned about the antibodies. Does the level of antibody give an indication of the state of the thyroid or whether you're in a flare up or anything? Just wondering if it is worth regularly checking on these or not?
No, it's not worth regularly checking on them. They tell you nothing about the state of your thyroid because they're not connected.
What, exactly, do you mean by a 'flare up'? I don't like that expression because it means different things to different people. And, a 'flare up' is not the same as a Hashi's flare - which I prefer to call a Hashi's 'hyper' swing. Perhaps this quick run-down on Hashi's might help you understand better:
OK, so Hashi's is an autoimmune disease, where the immune system attacks and slowly destroys the thyroid. It is diagnosed by testing Thyroid Peroxidase (TPO) antibodies and Thyroglobulin (Tg) antibodies.
Contrary to popular belief, it is not the TPO/Tg antibodies themselves that attack the thyroid:
"When lymphocytes infiltrate the thyroid gland, mistakenly taking it for a foreign bacteria invader, they damage the thyroid gland and release thyroid peroxidase &/or thyroglobulin into the blood stream. These don't belong outside of the thyroid gland so antibodies are developed to mop them up.
The antibodies are a result of the attack on the thyroid gland, the antibodies don't cause the attack."
After every immune system attack on the thyroid, the dying cells release their stock of thyroid hormone into the blood stream, causing the levels of the Frees to shoot up - FT4 to around 30 something, FT3 around 11/12 - and the TSH therefore drops to suppressed.
There is no knowing how long these high levels will persist, but eventually, they will drop by themselves as the excess hormone is used up or excreted, and not only will you become hypo again, but slightly more hypo than before, because there is now less thyroid to make hormone.
(NB: A Hashi's 'hyper' swing is not true hyperthyroidism in that your thyroid is over-producing thyroid hormone. It's physically impossible to 'go hyper' if you are basically hypo. The thyroid cannot regenerate itself to the point of over production of hormones - or even normal production. Very few doctors appear to know that.)
Therefore, it's very important that your doctor does not reduce your prescription, because you’re going to need it again! If you start to feel over-medicated at that point - some do, some don't - the best thing is to stop levo for a few days, then, when you feel hypo again, start taking it again. It's very important to know one's body, and how it reacts.
There is no cure for Hashi's - which is probably one of the reasons that doctors ignore it - apart from the fact that they know nothing about it, of course!
However, between the 'hyper' swing, and the descent back into hypothyroidism, there can be a phase - quite a long one, sometimes - of normality, where the person is neither hypo nor 'hyper'. This is where people sometimes start talking of having 'cured' their Hashi's, by whatever means. But, it doesn't last. Eventually, you will go hypo again.
But, there are things the patient can try for him/herself to help them feel a bit better:
a) adopt a 100% gluten-free diet. Hashi's people are often sensitive to gluten, even if they don't have Coeliac disease, so stopping it can make them feel much better. Worth a try. Some say that going gluten-free will reduce antibodies – I’ve never seen conclusive proof of that, but, you should be aware that even if you were to get rid of the antibodies completely, you would still have Hashi's, because the antibodies are not the disease. It is not the TPO/Tg antibodies that do the attacking.
b) take selenium. This is not only reputed to reduce antibodies, but can also help with conversion of T4 to T3 - something that Hashi's people often find difficult.
c) the best way to even out the swings from hypo to 'hyper' (often called Hashi's Flares, but that doesn't really sum up the way it works) is to keep the TSH suppressed. This is difficult because doctors are terrified of a suppressed TSH, for various false reasons, and because they don't understand the workings of Hashi's. But, TSH - Thyroid Stimulating Hormone (a pituitary hormone) - tries to stimulate the thyroid to make more hormone, which also stimulates the immune system to attack. So, the less gland activity there is, the less immune system activity there will be, meaning less attacks, gland destruction slowed down and less swinging from hypo to hyper and back.
I think Im going to print this out to refer to as it is very useful! I suppose I was thinking of a way to reduce the attacks on the thyroid and 'calm it down', but there's seemingly no way to do this apart from keeping the TSH low? Sorry to sound so dense! My consultant and doctor havent explained anything to me just that I will need thyroxine and my thyroid is failing.
Its not the antibodies that attack the thyroid, as I said above. So, reducing them won't reduce attacks or calm things down.
Not a lot is known about Hashi's. We don't know what triggers attacks. And, there are probably as many triggers as their are Hashi's patients. So, no-one knows how to reduce them. For some people it would seem to be gluten, but it's not certain. It's not certain that keeping the TSH low will have an effect, either. We just do the best we can. But, I think it's pretty certain that the antibodies have nothing to do with it.
I don't suppose your consultant or doctor know enough about it to explain anything. I did have a GP try to explain it to me, once, but it was pure fiction! lol Horror fiction, actually. It bore no resemblance to reality. I had to learn it all myself from books and research papers on internet. Something that the majority of doctors don't bother to do.
Greygoose how did you find out all this. I am so grateful for this information. My 2 doctors both Told me that because of my high antibodies I need to take action now have either radiation or have it removed. I still feel why would I wanna take out my thyroid and or kill it when I feel great I’ve never felt better be eating healthy I walk every day and being completely gluten-free I’ve never felt better. I don’t know how to thank you for this information but I also am going to print this out thank you so much
Ah, your doctors are probably confusing Hashi's with Graves. A lot of doctors can't tell the difference! (Well, they're both autoimmune, aren't they??? lol) I know that sounds shocking, but it's true. They probably have vague notions about RAI or TT for Grave's people who don't go into remission, and think it applies to all antibodies! But, no, there's no reason to get rid of your thyroid because of Hashi's. It will die off eventually, anyway. They can be so dim.
feeling wobbly now and the with thyroid problems in my experience is normalhormones all in the air!
I take primrose starflower too and B complex but with the onset of anxiety maybe chat to your GP as he/she may prescribe propanalol (beta blocker) which helps with anxiety which could be part of thyroid
From the onset of overactive thyroid I was put on it for a good while and I am back on it now
I have asthma so the doctor won't give me beta blockers and when I asked about a longer term anti-anxiety medication such as citalopram, he said he didn't advise it and to try breathing exercises! It really does feel like a chemical thing though, especially as it swings with the hormones. I think it has been a triple whammy of postnatal hormones, thyroid going a bit crazy and Covid anxiety all converging at the same time!
May be also consider omega 3 fish oils and / or a cod liver oil? Eg I’ve recently switched to lamberts and take 1 cod liver oil (with v low vit d and 100 rda vit a) plus 1-2 of their fish oils. I’ve noticed better joints and no hot flashes. Pregnancy can really drain the body and periods can be wonky afterwards.
I started seed cycling too; this technically also involves fish oils in the first half of the cycle and Eve prim in the second. However I tend to take both throughout. (You’re supposed to take Eve prim first half for conception.) Many women report an improvement in the crash of hormones.
Some calcium and mag together in run up to period might help too.
Have a look at Lara briden’s the period book or her blog for balancing periods. To be honest, correct thyroid dose does this but it can be a balancing act with other things. She’s got a new one looking at perimenopause out v soon/ now.
As said above, not taking these things near your thyroxine is v important; including high fibre breakfasts (the seeds could interfere with absorption. I think I made this mistake when I first started!)
That is very useful thank you and I will look into that Lara Briden book. I have always been affected by my hormones but things seem to have gone a bit crazy this time, which didn't seem to be as bad with my first two children. I don't know if it's because I'm 36 now and was in my late twenties with my older ones.
Her new book is very much on periods towards menopause and peri menopause. I haven’t read it yet; it’s just out on kindle and out in Aus and NZ. It’s worth reading around the subject. Basic supportive vitamins are b6 and magnesium, omega 3s. She recommends taurine too which I’ve found v helpful for sleep. But the right level of thyroxine is the most important factor. Remember it can take 3 months for everything to settle properly too.
Hi there, I had this procedure 13 years ago and now on 100mcg of Levo plus a small amount of Liothyronine. I was started at 50mcg and increased every 6 weeks. Your anxiety and crampy fingers are typical of needing more Levothyroxine. 🌼
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Gluten free diet can reduce anxiety for some Hashimoto’s patients as well as improving hypothyroid symptoms
They lost my first coeliac blood sample but I have another on Monday. Am going to go gluten free regardless of outcome. I've just continued to eat it for the test. Happy to try anything 👍
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Advice on vitamins please and blood results.
Advice on blood test result please
