This is my first post and wondering if anyone can shed some light. I've had problems since having my baby in May 2021.
When first diagnosed they said I had positive TPO antibodies, but never mentioned Hashimoto's to me. I've learned this through my own research. They said I would become hypothyroid but because I was symptomatic they put me on 50mcg daily.
So, I have been taking levothyroxine now since May 2022. The first couple of months I felt great, no symptoms whatsoever. I felt like me again. Last month I developed joint pain and heart palpitations (it seems to have been when I was ovulating). I'm now experiencing the same thing and currently ovulating. I've never experienced either of these things before and its very worrying. The doctor ran blood tests including thyroid, Rheumatoid arthritis, anaemia, full blood count - 'all normal' - I will get copies of all blood results.
I'm at a loss tonight and really struggling. Can anyone advise? Thanks.
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EmmaW94
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Are you still on 50 mcg? If so, I'm not surprised you're having problems! That is just a starter dose, and should have been increased six weeks later. It's perfectly normal to feel good to begin with, and then have hypo symptoms - even some new symptoms - come creeping back in again. It just means that you need an increase in dose.
Ignore your doctor when he tells you results are 'normal'. It doesn't mean a thing. All he is saying is that the results are all within the range. But, as the ranges are usually so wide, that does not mean they're normal for you. Always get a print-out of results from reception - don't ask the doctor, he won't like it. Pretty sure you need an increase in dose, nothing more sinister than that.
Hi Greygoose, thank you so much for your reply! Am I right in thinking that as 50mcg lowered my TSH levels from 8 to 1.6 that if they increased my dosage this would make my level go more hyperthyroid within the next three months? I'm just so confused as I've never had this joint pain and heart palpitations before. I'm really struggling with it. Its now lasted two weeks. I felt so much better before being on medication. Thank you, I really appreciate it xx
No, I'm afraid it doesn't work quite like that. It's not that simple - especially as you have Hashi's, where levels can jump around a lot. You cannot predict what your TSH will be on any given dose.
Besides, just having a low TSH does not automatically indicate 'hyper'. It's the thyroid hormones - T4 and T3 - that do that. But, as you have Hashi's/hypo, you cannot become truly hyper, just sometimes false 'hyper', which has nothing to do with your dose.
Hope that's not confused you even more! Do you know how Hashi's works, what it does? Does your doctor only test TSH? If so, that is very wrong of him.
The fact that you felt great when you first started levo and now you feel bad, is perfectly normal. That's the way it goes, and it just means you're ready - more than ready in your case! - for an increase in dose. But, if your doctor only tests TSH, it's going to be hard to persuade him to give you an increase. You will have to insist on your symptoms. And, don't be fobbed off by him telling you your symptoms are nothing to do with your thyroid! The all try that one on. Anything and everything can be - and usually is - a hypo symptom.
Having said that, joint pain could be due to low vit D - which most hypos have. Have you had your nutrients tested: vit D, vit B12, folate, ferritin?
Forgot to say, palpitations are most definitely a hypo symptom, if you've had your heart checked and been given a clean bill of health.
Oh wow I really had the wrong idea in my head! Thank you so much for clarifying this. I am beyond grateful. My last blood test was in October and he only tested TSH levels. So, he's naughty! I must admit, I am definitely confused with it all. I put this to the back of my mind slightly and didn't do any research as I had gallbladder issues and have just had surgery so that seemed to take precedent. Literally days after surgery I was onto my next 'issue' and trying to do all the research possible.
I guess I kind of know how Hashi's works but I think I have a lot to learn.
I definitely need to become stronger in my approach when it comes to doctors. I did go the other day and was completely fobbed off. They ended up giving me a lower dose of 25mcg. She was so dismissive and didn't care about a thing I was saying.
Hey I have a very similar story to you and this happens to me re the palpitations and joint pain. I haven’t found my optimal dose but hoping if I do that those symptoms go away especially the joint pain. Like you the docs checked for other things but nothing shows. It’s definitely thyroid related x
Thank you for replying! It's such an awful feeling isn't it. It just happened over night and I always have the joint pain and heart palpitations together for the most part too. I am so drained. xx
So we can offer better advice, it would be helpful to share blood test results (with ranges in brackets) for:
TSH
FT3
FT4
Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)
If you don’t have any test results, do ask your GP for a copy/ ask for other tests if not completed. If your GP is reluctant to test (some unable to test FT3/ FT4 if TSH within range), look to do this privately (as many members do).
I, like many other forum members, did not feel well until both thyroid medication and key vitamins were optimal and as greygoose has said, this is not the same as GPS saying ‘normal’ or ‘within range’
Thank you for replying! My Serum ferritin - Normal 25 ug/L 15.00 - 300.00ug/L
I know that's on the lower end and based on NHS and NICE guidelines this is basically deficient (I think). So I guess I'll start supplementing. Thanks for the advice xx
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Unsure of Vitamin D levels unfortunately but I definitely think I'm low so I've started supplementing.
I feel horrendous and my doctor lowered my dose yesterday to 25mcg. She said my thyroid must still be functioning and adding in its own hormones, so that alongside the levothyroxine is causing my symptoms (I spoke to her about feeling better when my TSH was higher) I'm still learning a lot.
There are distinct connections between thyroid and ovarian function that may become magnified when thyroid hormones are insufficient and/or autoimmunity is high. Hashimotos is an unwanted autoimmunity inflammatory response and the first half of the menstrual cycle when oestrogen levels are increasing will support inflammatory processes, whilst the second half dampens any immune response (this is an evolutionary process to enable a potential embryo to implant in the uterus).
All steroid hormones (including oestrogen & progesterone) influence the development of immune cells and modulate the output of the immune system. Many immune cells have receptors for O & P hormones including cells responsible for creating autoimmunity. Sex hormones also activate some of specific genes that play a role in symptom flares and this is why many members become more Hashi symptomatic during certain times in their 28 day cycle.
Conventional medicine isn’t really interested in any of this. Functional practitioners may offer a DUTCH Mapping test that gives info on a months hormonal patterns but personally I would address the thyroid autoimmune side first by gaining good understanding from books such as 'The Root Cause' by Isabella Wentz. For specific thyroid/ovarian info anything by Suzie Cohen is good. The goal is to reduce thyroid antibodies and so the bodies heightened immune response.
This link is from Palomahealth (I haven’t read it all - just wanted to show there is a load of info out there). Just google something like ‘menstrual cycle and Hashimotos’.
You are on a pretty low dose of Levothyroxine so to ensure optimal thyroid hormone replacement levels you will need to have TSH, FT4 & FT3 tested. If your GP is uncooperative members use private labs and post results here for members comment.
You can also be hypo-symptomatic on a cellular level if thyroid hormone replacement meds are sufficient but working ineffectively. LH & FSH are pituitary hormones, as are prolactin & TSH. The later two correlate positively and the first two inversely with prolactin so if TSH is raised (as in hypothyroidism), prolactin will be also and LH & FSH will fall. LH & FSH are a part of period regulation together with O & P so menstrual changes are common in people with thyroid disorders.
Also important to have good levels of iron, VitB12, folate and Vit D. Again if your GP won't test, members use private labs - link above.
Just to add to the excellent advice here, if you are planning to conceive again, ensure that your TSH is below 2, preferably nearer 1. Otherwise you are likely to be prone to miscarry, and obviously that's a traumatic event that no one wants.
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.
once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12
EXTREMELY common to have undiagnosed gluten intolerance
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function 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
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
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.
Can I just mention if antibodies are high for coeliac disease you may not require a gastroscope and biopsies.
I don’t know if all areas use this method now.
A scope and biopsies were always done, but maybe due to waiting lists and money or data they might of collated, they are now supposedly adopting this method… I guess it helps a few not having to eat gluten to be tested.
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