Fatigued to the point of feeling like wading through treacle. Weight gain. Severe pain in shoulder and right heel to the point can’t walk some days. Ectopic heart beats that left me dizzy and faint. Constipation. And strange feeling in my throat almost snoring sounds while awake. Unable to think clearly.
Had bloods taken a couple of weeks ago TSH >100, free T4 5.1 cholesterol 8.26, thyroid peroxidase ab 48.1 (MCH 33.8 and RDW 14.1-doctor Saïd not to worry about these as all other tests in range)
My last blood tests were 2 years ago and everything was in range at that time. Dr called me and said he believes it’s auto immune disease causing this. I’m assuming it’s hashimoto disease but I guess endocrinologist will decide.
Both my sisters have also got a diagnosis of hypothyroidism along with my aunt.
Are these test results pretty standard for someone newly diagnosed. I feel so unwell and can’t work or function normally and I’m scared! Will I ever feel well again!
Gp started me on levothyroxine 50 and I’m waiting to see endocrine -I’ve called and they can’t tell me when they can see me but confirmed they have received my urgent referral. I thought no there has been a slight improvement but not much. I feel so low. Is it normal to feel so dreadful with this?
Any advice or reassurance or anything I can do to help myself I’d really appreciate.
Thanks in advance Y x
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Bonnie_Yvonney
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It’s going to take several months to slowly get dose levothyroxine increased to your eventual maintenance dose
Gp started me on levothyroxine 50 and I’m waiting to see endocrine -I’ve called and they can’t tell me when they can see me but confirmed they have received my urgent referral. I thought no there has been a slight improvement but not much. I feel so low. Is it normal to feel so dreadful with this?
50mcg is the standard STARTER dose
Nothing happens quickly with hormones. You should slowly see some improvements
Then likely see return of symptoms as you get nearer 6-8 weeks on 50mcg
This is normal…..shows your body is getting ready for next 25mcg increase up to 75mcg
Typically dose is increased slowly upwards in 25mcg steps until symptoms resolved…..typically eventually on approximately 1.6mcg Levo per kilo of your weight per day
which brand of levothyroxine have you started on
TPO antibodies 48
What’s the range …..most commonly it’s 34
So over 34 confirms as cause is autoimmune
Retesting
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
Request GP test these at next test
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
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)
Lots to digest in the information you have provided.
1. The brand is Teva 50mcg.
2. Gp has me scheduled for another blood test 6 weeks from me starting the tablets.
3. Range of TPO antibodies is 0-5.9 mine is 48.1
4. My vitamin B12 was in range 234 (range 180-640).
5. Ferritin 137 (range 30-204)
6. Folate and Vit D not tested so will get added onto next lot of tests.
My bloods were taken early morning so hopefully accurate but will ensure they are drawn as per advise in your reply.
I’ll get Gp to check for celiac disease as suggested and certainly up for trying the gluten free diet post testing I’d do anything right now to feel well… or at least better than I’m feeling right now.
Teva is a bit of a Marmite brand …..a few love it……a few can’t tolerate it
Quite a lot of people prefer to avoid it if possible
You might need to consider a different brand…..difficult thing to decide when starting on Teva
Many people find Levothyroxine brands are not interchangeable.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots,
Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
Lactose free brands - currently Teva or Vencamil only
Teva makes 25mcg, 50mcg, 75mcg and 100mcg
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Vencamil (currently 100mcg only) is lactose free and mannitol free. 25mcg and 50mcg tablets hopefully available from summer 2024
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
Once you have had folate tested
(A week or two after starting B12) …..add a separate vitamin B Complex
Continue with both until your serum B12 is over 500 (or Active B12 level has reached 70), you may then be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
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) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
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 until over 500 (or active B12 over 70)
Post discussing how biotin can affect test results
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 as per NICE Guidelines
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
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Thank you there appears to be a strong link there for gluten free diet regime and I’ve been looking on line at some of the stores own brands for vegan and gluten free products and certainly plenty out there!
We are a friendly & supportive group and are here to help. No doubt you feel bewildered by the diagnosis, we fully understand… Just remember that by starting Levo you are on a journey to recovering your health. It will take time and patience to optimise both thyroid medication and key vitamins.
You have had great advice from SlowDragon Myself & many others here received similar advice when joining the forum and by reading posts and following suggestions, have managed to improve our health & wellbeing.
Keep posting and seeking advice. We are here to help & support 🦋
It’s reassuring to hear that I’m on a journey and this is the start to feeling better again!
I guess it’s about slow and steady wins the race.
I’ve been scared stiff that I won’t get better as neither of my sisters appeared to have the symptoms I have and got diagnosed when having bloods taken for other things.
I have had to take some time away from work and have been worried that if I don’t improve what will I do.
Slow dragon certainly has given lots of information which I am grateful for and will read through.
'I’ve been scared stiff that I won’t get better as neither of my sisters appeared to have the symptoms I have and got diagnosed when having bloods taken for other things.'
People can have different symptoms. However I would put money on it that some of your symptoms are from b12 deficiency.
Thanks Litatamon I’m beginning to think this may be the case although my vit B12 was in range slowdragon says they are low… so got a telephone consultation with the pharmacist from the surgery next week I’m going to ask about this and getting other bloods checked that were suggested and some sort of treatment x
I am so sorry to tell you that you can not unfortunately rely on any medical professional, including specialists, to know a thing about b12 deficiency/Pernicious Anemia. I know that sounds absurd, but it's the unfortunate truth. Please educate yourself as much as you can & know you need to be your own warrior in this area.
I am going to come back on this post and leave you some helpful links.
I can not overstate what a gem this video is - the wealth of information & the highlighting of the dangers of leaving b12 deficiency strictly in most doctors' hands. youtu.be/QqjyAeOLyKM?si=Bj4...
These links are informative and concise. And also contain medical footnotes -
Thank you from what I’m reading here it sounds like I maybe needing to educate myself a whole lot on my health and then try and get professionals to listen then act! Not an easy task…
The pharmacist is calling me next week about my high cholesterol… did you start medication to help or once things evened out with the correct doses of Levo that it corrected?
I’m thinking that the pharmacist is likely to offer statins.
The brain fog made me burst into tears at work as I was trying so hard to write an investigation report and I just couldn’t do it! That’s when I knew I needed to stop work! I’m blessed at least I get sick pay some people don’t goodness knows how they manage x
A Helpful Quote from another members GP ,on what to expect when starting treatment for hypothyroidism.
"The way my new GP described it was ..."You know how your body is continually breaking down and rebuilding itself? Well, the thyroid controls the rebuilding, so if it isn't working you carry on breaking down but don't rebuild properly. Your body now has a lot of catching up to do, which will take a minimum of 12 months, probably a lot longer...." or words to that effect. He also said it would be a saw tooth recovery (get better, go backwards a bit, get better, go backwards a bit) and he's been right so far."
I’m assuming it’s hashimoto disease but I guess endocrinologist will decide.
High TPO antibodies usually means Hashi's, yes. But UK doctors don't call it that, they call it Autoimmune Thyroiditis. Same difference.
But the symptoms themselves are being caused by your low FT4 and FT3 - including the high cholesterol.
Are these test results pretty standard for someone newly diagnosed.
Not sure there is such a thing as standard test results. Your TSH is certainly very high - mine was only 11 on diagnosis. And your FT4 is very low. That said, when you have Hashi's, levels can vary enormously. But the important thing is that you have now been diagnosed and can start your journey to good health.
I feel so unwell and can’t work or function normally and I’m scared! Will I ever feel well again!
That is pretty standard, yes! Lack of thyroid hormones can cause terrible ill health and horrendous symptoms. And the symptoms don't always correspond to the blood test levels. We're all different, and never was that more true than where hypothyroidism is concerned. But, get some thyroid hormones into your body and you will eventually feel well again! Don't worry. The trick is to get the right amount. And to do that, we have to raise the dose very slowly, because it's so easy to miss your 'sweet-spot'. No point in being in a hurry with hypo!
Is it normal to feel so dreadful with this?
Depends on your definition of 'normal'. But most people do feel so dreadful, yes. Every single cell in your body needs the thyroid hormone T3 to function correctly. So, if that is low anything and everything can go wrong. It affects every part of you, right down to the tips of your nails.
Any advice or reassurance or anything I can do to help myself I’d really appreciate.
Stop panicking, for a start. You're not going to drop down dead on the spot. But you are going to slowly get better.
Be kind to yourself. Pamper yourself a little bit. Don't expect too much of yourself. It's time to put 'yourself' first.
Have you had your nutrients tested: vit D, vit B12, folate, ferritin? They are bound to be low, if not deficient, and that is going to add to your symptoms. Get them tested and supplement as necessary - we can help you with that - and I'm pretty certain that will help with a lot of things.
Get plenty of rest. Your body is under a great strain at the moment. And this is not the time to push yourself to springclean the spare room! Only do essentials and put your feet up as much as possible.
Make sure you feed yourself well. Above all make sure you eat enough. No low-calorie diets to get rid of any weight you might have gained. You need those calories to convert the levo (T4) you're taking into the active hormone, T3. Try and eat a balanced diet - plenty of protein and fresh fruit and veg, a decent amount of good fat (olive oil, butter, coconut oil, etc.). Don't skimp on the salt. Your adrenals need that, and they will be taking quite a battering right now. Give yourself the occasional treat: bar of chocolate or cream cake. A little bit of sugar won't hurt you from time to time, and it boosts the morale.
But, avoid unfermented soy in all its forms (soy flour, soy oil, soy protein, etc.), artificial sweeterners, and highly processed seed oils. Also, avoid anything that upsets you, such as dairy, gluten or nightshades. You know what your body does and doesn't like. And no eating things you hate because 'it's good for you'! lol If you don't like it, it's not good for you at all.
But, I'm waffling on, here, and I'm sure I'm boring you to death. I just want you to know that you're not alone. You're in good hands, now, there will always be someone here to reassure you and answer any questions you might have. You've come to the right place.
Yes, it can be normal to feel very unwell until optimally medicated with thyroxine. It will get better, as will you, so hang in there. You are in the right place to get good advice and support.
Infections are more common when under medicated too. I hope you soon feel better. It can take a while to stabilise but amazing when you do and realise how bad you have been feeling. Good luck!
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