hey guys, I’ve been diagnosed with hypo and hashi in June this year, I’m currently on 75mg of levo, i have an inflamed thyroid/gotrie, I take a lot of supplements and the only symptoms I have at the moment is loosing my hair, sensitive to cold, I get hives/ Urticaria on hands feet and body on and off, and air hunger sometimes, I’ve had all my vitamins checked that the nhs will do, and are slowly going up to optimal levels but not quite there yet, apart from iron I’ve only just started supplementing with iron, I’ve never had my t3 checked despite asking the doc to test it they keep saying they don’t need to!! 🤦🏼♀️
Anyway fast forwards 4months to my first endo appointment on Tuesday gone, he questioned my medical history, asked me what symptoms I have, told me I don’t have any thyroid left maybe abit if tissue will be there!! He told me that all my supplements I take are a waste of money and the only one I should be taking is vit d, he told me that they don’t need to test t3, I asked him so how do u k ow that I’m converting well from t4 to t3?? He gave me some bull excuse answer, I had a blood test for this appointment it was only my Tsh and it was 0.18 at the time he told me I’m pretty much in remission just off that result alone!!
The only positive I got from this was that he’s sending me for another ultrasound on my Gotrie to check it’s ok, I felt like this appointment was a waste of time, he told me they was nothing I can do about my symptoms, and he then dignosed me there and then with hashimotos as I already knew I had it but docs wouldn’t dignosed me, the endo told me they is nothing I can do about my antibodies either!! I can’t reduce them told me to leave them!! he told me my meds are now levelled out and that I don’t need anymore levo otherwise it could turn me hyper!! But at the end of the appointment (I’ve got another 8 week check of meds blood test mid dec) he said if the doc increases your meds or decreases them that’s ok!! I was thinking like what??
Anyway walked out of that appointment with feeling overwhelmed and lost and was absolutely devastated with lack of knowledge and support from him!!
I’ve now hit a wall on what to do now??
I know I need to get my t3 checked privately and possible antibodies test to see where I’m at as for the past 3 months they have been 1000> no one told me they were over 1000!! Any advice what I need to do now??
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Such ignorance! It's shameful. BUT, I do agree with him about the antibodies...
Even if it were possible to get rid of them completely - and I don't see how you could do that - you would still have Hashi's. The antibodies are the result of the disease, not the cause.
With Hashi's, your own immune system is slowly destroying your thyroid by repeatedly attacking it. During the attack, the dying cells deposit their stock of thyroid hormone into the blood, causing the FT4/3 levels to rise sharply, and the TSH to fall. And, whilst that is happening, traces of TPO and Tg also leak into the blood, where they shouldn't be. So, the antibodies come along to clean it up. That's why antibodies are high when you have Hashi's, not because they are doing any damage, quite the contrary.
So, forget the antibodies, they are not your enemy. What is important is know a) that you're on the right dose of thyroid hormone replacement, b) how well you are converting, and c) the levels of your nutrients. And, it seems, that endo is totally ignorant on all those points! I feel sorry for his other patients that don't know any better.
Thank you, I honestly believed that when my antibodies are high that means that my hashi is still attacking my thyroid, so in order to reduce that attack I would need to reduce my antibodies?? So tackling my root causes would help stop the attack on my thyroid?? Or will this attack always happen because I have hashi?
Each blood test I’ve had both Tsh and t4 were going in the right direction, but I don’t know which levels are at remission or optimal/ and which levels is at the right level to have my levo levelled out at? As I don’t want to go hyper?
Thank you for helping with advice really appreciate it x
No, the antibodies are high because of the attack, they don't cause the attack.
So tackling my root causes would help stop the attack on my thyroid?? Or will this attack always happen because I have hashi?
How are you going to find the root causes? There are so many possibilities but no tests to guide us.
And, even if you did find the root cause, and managed to stop/reverse it, your thyroid is so badly damaged by now that you will still need thyroid hormone replacement for life, because thyroids cannot regenerate - at least, not to the point where they can make enough hormone to keep you well. Once you get to the point of needing thyroid hormone replacement, it's already too late. So, the disease will continue to run its course. But, at this point, it doesn't make much difference.
Each blood test I’ve had both Tsh and t4 were going in the right direction, but I don’t know which levels are at remission or optimal/ and which levels is at the right level to have my levo levelled out at? As I don’t want to go hyper?
TSH and FT4 are going in the right direction because you are taking thyroid hormone replacement. However, it is highly unlikely that 75 mcg will be your definitive dose, you're more than likely going to need more than that.
Remission doesn't come into it. Optimal is not a number, it's how you feel. When your symptoms are gone then you are optimal.
I'm really not sure what you mean by 'levelling out'. You will know when you reach your sweet-spot and then you stop increasing the dose. But, again, it's a matter of how you feel, not a matter of numbers. The numbers are just a rough guide.
As to 'going hyper'. That is goind to happen from time to time, because you have Hashi's, as I explained, and has nothing to do with your dose, 'because taking exogenous hormone cannot cause you to become technically hyper, only over-medicated). But, it's not true hyper, it's only temporary. Eventually you will go hypo again.
So sorry your experience is mimicking so many of us. You are on the right track with your concerns and the GPs know very little in the main and Endos are mostly diabetes specialists and can know even less. Look the Endo up - odds on they are in diabetes ergo not thyroid- just from their responses I would put money on it.
Vitamin and mineral deficiencies AND/OR under medication can cause hair loss.
If you read the NICE guidelines NG145 you will know more than they do. If you can look at them critically, you will see the contradictions and the ‘this is what we want you to do but if it isn’t working work to patient’s needs’.
Trouble is they (doctors) don’t know enough to use the latitude written in (for the most part). You have to take charge and manage them as well as your condition.
It’s easy to say, but don’t worry about antibodies. They are just doing their job. Your autoimmune system attacks your thyroid (what’s left) and the antibodies just come and clean up.
You just need to focus on alleviating symptoms , getting your levo and vitamin levels at a place that facilitates this. So you tweak and test and eventually you will see the blood results that correlate to you feeling well. Over a long period of time this may drift as it is not a fixed point, but you will absolutely come to understand your symptoms and what is required and if you need a sounding board, as we all do from time to time - that’s what the forum is here for.
You do need to test everything so that you can see the whole picture perhaps not every time but regularly.
Latterly some move onto combination therapy or NDT. If you can reach a really good place on just Levothyroxine that’s great - easier, but never at the expense of your health.
I’ll ask SlowDragon to pop an info dump on for you. She did this for me a few years ago and with the help and advice of others on the forum I got back to wellness. I have written my bio to record the journey and explain to others the misconceptions doctors have. I have also written about my self advocacy- getting what I needed. It’s all on my profile- just click on my face.
Thank you so much, this is really helpful advice. When you say get tested for everything, what is everything exactly? Thanks I’m hearing about coristol but I don’t know if I need to be tested for this? Im just alittle lost with everything now, I have to admit im feeling ok in terms of symptoms just my hives and hair loss that’s bothering me really, I have energy ect x
If you go to the Thyroid UK site there is advice on tests and money off codes. I do a finger prick test with Blue Horizon (thyroid gold) others use Medichecks. If your GP is helpful (even if not familiar with the ins and outs) you can get them to check your vitamins and minerals . Have a look on the blood test information .
Cortisol is a good one to check as if thyroid’s struggling the adrenals will come in and give a supportive boost. Long term this can have effects. There are books and articles out there on this but in the first instance focus on Thyroid and get the tests done then come back with results and forum can advise -you can do a photo, but make sure your personal information is not visible
First step is to get FULL thyroid and vitamin levels tested correctly
Exactly what vitamin supplements are you currently taking
What are your most recent TSH, Ft4, vitamin D, folate, B12 and ferritin results
As you have Hashimoto’s has GP/endo done coeliac blood test yet…..if not you need that done BEFORE trailing strictly gluten free diet
Blood tests
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
Even if we frequently start on only 50mcg, 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
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.
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.
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.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to 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 may 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.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
I had a blood test for colic’s before I went gluten free and after a week of waiting results I get a message from the docs to say they didn’t test it because they ran out of my blood while lest I g for others tests!! I was so angry to which at this point I was gluten free over a week and didn’t want to go back they said I can have it again I wanted too,
I’ve not had a issue with gluten or dairy but I was constipated before I was diagnosed, the problem is I went dairy free, gluten free sugar free and soy free all at the same time as I didn’t know at the time I was suppose to do it one at a time!! No one told me!! So yeah that messed me up lost 2 half stone in about 3 weeks!! Which was shock to my system didn’t do me any favours, but now I’m settled not loosening any weight I still have dairy now and again, and sugar but in fruit and homemade cookies, occasionally, honey, I really want to try gluten again to see if I have any effect from this, so far I seem to react to herb thyme and tomato’s at the moment!! It’s seem that my hives flare up more when I have something my body doesn’t like!!
I’m on a lot of supplements
Vit d better you spray 3000iu with k2
B12 1,200 2x a day
b complex plus x1
Iron bisglycinate x1 every other day first thing in Morning 4hrs after levo, only been on 2 weeks now
P5P 50 (vit b6) recommended to try out for hives by izbella wantz only been on this 2 weeks now
Zinc 30 1x a day
Selenium 200ug 1x a day
NAC x 2 x a day
Megnesium glycinate 3x a day with every meal
Vit c-1000 x2 a day
Copper 2mg 1x a day
Super enzymes 1or 2, with every meal
Histamine digest if needed with high histamine meals so far I’ve not been needing it as hives are reducing
Probiota histaminX probotics 1x a day been having these for 3 months now I’ve ran out will get some more I think?
Organic turmeric occasionally have
Myo- inositol in a drink with every meal, I’ve reduced this to every now and again,
Out of all these I think something is working, I’m going to keep some of these going for 3 months and then test again to see if I still need them,
Only thing is I don’t know if I’ve got leaky guts, I don’t have any tummy pains but occasionally wind and mild tummy ache as wind passes,
I don’t think I’ve got ibs, or feel bloated after food, well maybe alittle but that coz I’ve normally eaten more then I should!!
I have hair loss and hives, the occasional air hunger!! I used to have constipation before I was diagnosed now I’m going 1-2 times a day,
I have bleeding gums having gums cleaned tomorrow at dentist, and I get mouth alcers when get poorly or run down,
Annoying they messed up coeliac test, but not worth going back to high levels of gluten now
Yes….generally only do one change at a time ….or you don’t know which is helping
So approx date when you increased dose to 75mcg ?
9th oct results
Vitamin D still too low
B12 extremely low
Which B12 brand and which brand of Vitamin B complex
suggest you increase dose B12 to 3 or 4 per day
You should have been given LOADING B12 injections after test result in June
Are you vegetarian or vegan
Have you been tested for Pernicious Anaemia?
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 folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
Yeah 75 was introduced after my last blood test on 9th October, im using better you spray for vit b12 at 1,200 x a day so 2,400! I also use seeking heath for b complex plus, and it’s funny u should ask that my mother has pernicious anemia and I told the doctors this when I was first tested it was very low and doctors didn’t want to give me anything told me to wait for my next lot of bloods which were 6 weeks later!! At this point I was feeling awful and told them I’m not waiting I’m going to supplement myself!! I can’t believe they left me and as you said they should have given me injections!! I still wake up each Morning feeling alittle tiny bit shaky or nervous not sure which, could that be to my lack of b12? Or vit d? Im not vegan or vegetarian I eat meat, a lot each week, even liver and onions I’ve been having too at least once a week if I can, not a fan of it but I know it’s good for us!!
I’ve always known about stopping biotin one week before bloods and I always have my bloods done before 9am, and I don’t take levo for 24hrs before test,
I also have my levo at 4am and so iron at 8am and breakfasts and other supplements at 10am, how long after taking selenium, zinc and iron and copper should I be tested?
As your Mum has PA and your levels aren’t increasing much despite significant supplementation politely INSIST in writing to practice manager and GP that they test for Pernicious Anaemia
I’m be managed to get my vit levels checked again by my doctor on my next blood test in mid dec, and my cholesterol check too, I’ll ask to add pernicious anemia onto it too but they might argue to me that my levels are normal range and don’t need to be checked!! 🙈 I’m the very person that doesn’t give up I will fight to get what I need!! But sometimes when I’ve got brain fog and I’m hard of hearing too it’s really hard to battle this on my own, with no support around me!! Xx
Think I mean 1 tablet with every meal so having 3 in total, I did drop it to two a day but I started to get alittle constipated coz of the iron I think so gone back to 3 a day
What did u recommend for hair loss again I’m a little loss on the info today, I’ve just had a shower and I had a little cry at how much hair I’m loosing!! I don’t know what to do, I’m already just started using biotin infused, gluten free, sulphite free, parabens free mane n tail shampoo and conditioner to see if it’s helped and I’m taking iron supplements but I’m not taking biotin supplements I think that was my next step but what are your recommendations?? Thanks 😊 this is my hair loss after one shower i dread washing my hair now!! My hair is getting really really thin by the week!! 😭😭
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
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
Omg I feel stupid now I thought ferritin was low iron levels and so I’m supplementing iron to help just that!! So I’m taking iron for nothing I might not need it and it’s ferritin that I need to supplement with? 🤦🏼♀️😭
If I didn’t come out of my Endo’s appointment disappointed and confused I would think something is wrong …. This medical department is a bunch of loons with no class.
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