I was diagnosed with Hashis in April and prescribed 50mg Levo but had to drop to 25mg after a week as felt over medicated - have been on this dose ever since. Also addressed low vitamin D and anaemia which helped so felt significantly better for a time. I was perplexed when a follow-up blood test in September showed a TSH of 4.16 (range 0.27 - 4.20) and there was no change to my Levo dose. In November I experienced two weeks of heat intolerance, sweating, palpitations and insomnia which I put down to a Hashis swing (please correct me if I’m wrong - the same thing had happened to me in January) so asked for another blood test: TSH 2.57 (0.27 - 4.20) no change to Levo dose. All GPs in my practice are satisfied that you are on the correct dosage of Levo if your TSH is in range and there is no debating this. However, this contradicts much of what I’ve read here.
Along with fibromyalgia and endometriosis it’s challenging enough to keep up with the demands of my job as director of a uni degree. Last term was really punishing and I was on my knees by the end - crushing fatigue, brain fog, flare up of fibro symptoms etc. My hair is also falling out again after a few months of remission. I’m feeling better after some rest and diligent physio but don’t have any reserves. I feel like I need a plan of action as not sure you could describe this as ‘optimal management’ and my sense is that each time I experience a hyper swing the net result is a loss of thyroid function.
What would you advise? Seeking out a private endo or doing a Medichecks test and taking it from there with my GP?
Grateful as ever for your wisdom. 🙏
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Realtiger
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Looking at your profile.....vitamin levels were DIRE....
With Hashimoto’s we frequently need to supplement continuously to maintain optimal vitamin levels
Vitamin D at least around 80nmol and around 100nmol maybe better
Ferritin at least half way through range
Folate at least half way through range
Serum B12 at least over 500
Active B12 at least over 70
Vitamin levels are low BECAUSE you are under medicated
TSH must be under 2 on levothyroxine
Most people, when adequately treated will have TSH well under one
Most important results are ALWAYS Ft3 followed by Ft4
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
heat intolerance, sweating, palpitations and insomnia
These are all hypothyroid symptoms
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 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.
You need to get dose increase in levothyroxine up to 50mcg.....even if you initially only increase by 12.5mcg for first few weeks....rather than increasing by full 25mcg
Either see/contact GP for dose increase NOW and get FULL Thyroid and vitamin testing 6-8 weeks after increase to 50mcg
Or test NOW via Medichecks....then come back here for advice on next steps.....likely to show you need next dose increase and you can take results to GP and get dose increase in levothyroxine up to 50mcg
SlowDragon thank you for this and all your other assiduous replies. I could be even stricter about a completely dairy and gluten free diet but not sure I have many more gains to make in this area as avoid gluten, dairy and sugar 98% of the time and have done for years - have tested negative for celiacs in the past but have been greatly helped by a naturopath who put me on a gut healing protocol. I think it may have helped to slow the progression as my antibody numbers were not too high.
I have taken my eye off the ball with vitamin and mineral levels since numbers were improving. I take your point about ferritin as a non-meat eater - this definitely isn’t helped by heavy bleeding every month.
Appreciate your clear advice re next steps - I can’t persuade my GP to increase my dose if TSH is within range or to test beyond TSH, vits & fbc so think I will go the Medichecks route - I’d like to know what my T3 &T4 levels are so I’ve a proper benchmark for comparison.
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.
I can’t persuade my GP to increase my dose if TSH is within range or to test beyond TSH,
Your GP is clueless then
Guidelines are quite clear
Dose levothyroxine should be increased slowly upwards in 25mcg steps until TSH is ALWAYS Under 2
See/speak to different GP
Print these guidelines out and ask why they are not following them?
guidelines on dose levothyroxine by weight
Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
Oh my, Realtiger, you are going through the wringer. I think you need to change GPs. I am at a loss for words to describe your treatment... You must be dreadfully under medicated. And you must be so incredibly dedicated and strong to have kept going. I used to work in academic publishing (no picnic either!) but therefore I know how hard lecturers work and the ever-increasing number of pressures they were under, even before the pandemic. Others will give better advice, but totally agree re full vitamin panel and tests for TSH, T4, T3; either privately or with a different GP... one of my mistakes on this thyroid journey was sticking with the wrong GP for too long...
Lotika thank you for your kind words and understanding - it means a lot. These days I feel like academia is for a certain kind of thoroughbred and feel more like a piebald pony😂 it’s my students who keep me going but have been contemplating a career change as health issues are making it difficult to manage at the best of times. I can imagine the same being true of academic publishing. I’m desperate to know whether I’ll be back in the classroom as well as teaching online or just the latter - there’s so little time to reengineer everything. I’m sorry that you had to learn about your GP the hard way - I fear I may need to change practice as seems I’m dealing with a policy/consistent clinical approach to lab tests. Sounds like a private blood test will be a good place to start.
Appreciate your advice and hope you are feeling better these days!
Great plan re private blood tests: I think it will get you there quicker!
Please don’t make any career decisions or judgements about thoroughbreds and piebald ponies based on how you are feeling now It takes time to find the right medication levels and when you do, it will change your brain chemistry, your energy levels, your sense of your own intelligence, competence, resilience... in short, everything.
I say this feeling adequately medicated since yesterday after about 5 years! I’m a different person. I had forgotten that I used to think I was a bit ADD back when I was well, because 5 years of depressive brain fog will make you forget who you used to be. I had also forgotten that I had all sorts of strategies for dealing with the fact that I was a bit ADD, as of course I have not needed them for 5 years! It was a part of “real me” which I didn’t entirely celebrate, so it’s weird to be experiencing that again. But it’s really special to feel that I have got myself back, somehow, or that I am getting closer... The ADD thing goes right back to childhood, so I think it is/was “normal” me and not hashis-related.
I have not long started on T4 & T3 combination therapy and the difference in how I feel is astounding. Today, I can’t believe I spent 18 months trying to make career decisions whilst very unwell! The problem is that we can be inadequately medicated for so long that we completely forget who we really are and what we’re truly capable of and we begin to perceive “inadequately medicated us” as “the real us”, when it isn’t. (Oh my, that is one clumsy sentence, but I can’t think of a better way to explain how this messes with your sense of self at the deepest level!) I had begun to think I must have been faking it in my career back when I was well, if that makes any sense?! I had begun to think my symptoms must be in my head, because the doctors kept telling me that my thyroid medication was fine when it wasn’t, so it feels as if I my mental health has been handed back to me... crazy stuff.
Anyway, I am waffling again and my head is spinning whilst I try to make sense of my own experience! There’s some info in my profile which outlines my journey and the mistakes I made... it needn’t have taken me 5 years to get here I hope you can get the right treatment soon and start the journey back to you!
Have you actually had any labs that back up your theory of a Hashi's 'hyper' swing? Because all those results you've given above are hypo. It's very difficult to go by symptoms alone, because so many of them can be either hypo or hyper symptoms. But, here's a brief rundown on Hashi's, to see if any of it helps:
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.
As for your ignorant doctors, I'm not sure what you can do. They just don't have any in-depth understanding of the TSH, what it is and what it does, because they didn't learn about it in med school. You'll just have to keep grinding them down until they give you an increase to shut you up! Does work sometimes.
Thank you for your detailed reply greygoose . The only reason I even know about a Hashis swing is from reading your informative replies to others. 🙂 Apologies if I have misunderstood. The only lab results I had to go on showed a drop in TSH from 4.16 (0.27 - 4.20) to 2.57 (same range) so not a swing in the way you describe showing hyperthyroid levels in the blood and this lab work was done after symptoms had subsided. My mistake lies in associating heat intolerance, palpitations and insomnia with symptoms of hyperthyroidism. Your explanation of suppressing TSH makes perfect sense to me. I get the feeling my GP practice thinks of Levo more like a crutch to help a limping thyroid along which isn’t the same thing at all (or true from what I’ve gathered from your other posts elsewhere). I will get a full thyroid panel done privately and see if this helps to convince them otherwise.
I get the feeling my GP practice thinks of Levo more like a crutch to help a limping thyroid along
Yes, a lot of doctors think that. But levo doesn't do anything at all for the thyroid itself. It's not thyroid support, it's thyroid hormone replacement. In other words, when you start taking it, your thyroid stops production of thyroid hormone/goes to sleep, which is why starting on too low a dose can make you more hypo rather than less. Levo is not any sort of cure for hypothyroidism, nor does it make the thyroid work more efficiently. It just replaces the hormone your thyroid can no-longer make enough of to keep you well. I actually had one doctor who thought that levo was going to 'kick-start' my thyroid and it would snap back into full working order!!! lol In your dreams, matey.
I am quite new to this but from what I gather GPs are not massively knowledgeable about thyroid stuff. Do you not have any check up with endo or did they discharge you to be managed by GP?
Or see if you can see another doc, do you have any medical cover with work?
kittyelen I could be mistaken but I don’t think a referral to an endo was indicated in my case. As I was sub-clinical but symptomatic with positive antibodies for Hashimoto’s I had to beg for a trial of Levo as it was. It does seem as if this is an area of medicine that few GPs have deep expertise in - I did start explaining that my understanding was that TSH should be 2 or below but my GP cut me off and said ‘your TSH is in range and that’s exactly where we need you to be.’ End of story!
I’m kicking myself for not taking cover 4 years ago when a new healthcare plan with a waiver for pre-existing conditions was on offer - no such luck now 🙁
Oops yeah sorry it is new to me I only just found out they refer if overactive (which I am) but underactive normally treated by GP unless really severe. I think if in range trouble is, GP's do stick to those guidelines so they see being in range no issue....but then they should really be looking into what else is causing the symptoms or if more underlying!
Fibromyalgia and endometriosis sound challenging enough as it is! I hope you manage to get your symptoms under control and keep safe.
You should have hashimoto manage by an endocrinologist. Hashi like yo-yo it swing up and down so fast and hard to get the right dose to stay on so pat Attn to your symptoms and consult with your dr. To regulate your dose. I have an Endo and I regulate my own dose by consulting emailing messaging my dr for an ok and regularly check blood levels. I don’t advise anyone to do this on your own.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
It takes time to find the right medication levels and when you do, it will change your brain chemistry, your energy levels, your sense of your own intelligence, competence, resilience... in short, everything. 
I hope you can get the right treatment soon and start the journey back to you! 
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