I've been suffering for 4 or so years, 2 years ago had a fibromyalgia diagnosis when nothing else was found. TsH was the only thing ever checked. I went back again last week and demanded more. My TSH is back down from 4 to 1.9mol/l, T4 is 10mol/l, T3 is 4 and two sets of thyroid antibodies at 245.
I'm praying I get supported even tho my TSh has come back down??
well done advocating for yourself! Good for you 👏
It is likely your TSH is swinging up and down with Hashimoto’s. Are you taking any thyroid replacement eg Levo?
If not, my advice would be watch and wait, meanwhile ask the GP to test B12. d, ferritin, folate, selenium, zinc (full iron panel also useful)
Also ask to be tested for Coeliac and Pernicious Anaemia (both common alongside Hashimoto’s).
On the basis of those results post a new message here and the community will make recommendations for supplements and hopefully those fibro symptoms may well be eased.
A good place to start is Izabella Wentz the thyroid pharmacist, there is a huge amount you can do with diet and nutrition that will really help you. Her books are excellent.
Thank tou,
I am not on replacement as yet. My question is, will I be made to wait until things really get bad or should I be pushing for medications?
You're unlikely to get a diagnosis from an NHS GP with those results.
My consultant would medicated you though so perhaps try and push the NHS but if you're able I'd recommend seeing a private thyroid consultant.
I lost years to the NHS's 'watchful waiting'.
Hi 😊 I find your information super helpful. I've been knew diagnose with similar bloods though my antibodys are higher. Everyone keeps saying I need medication but I see some people say see and wait and get everything optimal. I do see quite a lot of conflicting info. What you have said is what I wanted to actually do. Xx
Good for you! Sometimes we know what we need, (….and sometimes we have to be willing to listen 🤣) glad you feel confident in your current strategy, with Hashimoto’s we have to be able to adjust, adapt and do the very best for our overall wellness knowing things can change. It’s not easy 🙏😊
Thank you so much for your words. I spoke with my husband and I feel confident in my decision for now. I habe said I will try and get very thing optimal now for next 3 months retest and go from there. I just think I felt such a pressure I was told I had Hashimoto's Thursday by Private thyroid specilist and they wanted to start treatment but I just want to do research before making such a big decision and jumping to quickly in. Thank you ❤️
Good for you 👏🌱
Have requested all the tests, read the book and started thyroxine 25mg. Praying fir a better half of the year
Great!that is what I started on. Be sure to go back in 6-8 weeks for the next blood test and dose increase, if appointments take a while to get, plan ahead and ask for an online or phone consultation Remember you may feel a little worse some of the weeks (week 4 for me was the worst, but gradually better to week 8) . Take it on an empty stomach and don’t eat anything for an hour. That will maximise absorption. If you feel odd first week try alternate days or splitting in half morning and night for a week. Smooths it out a bit. Any gurgling reflux weird stomach reactions or itchy skin can be related to some Levo brands, some people are fine others not. Which brand did you get?
Send updates via a new post 👏🌱
Thank you, I have Eltroxin. I am in Australia. Assuming the brands are the same here?
No - Eltroxin in Australia is a completely different formulation to Eltroxin in the UK.
In the UK, Eltroxin is from Advanz Pharma/Mercury Pharma. In almost the entire rest of the world it is from Aspen.
Further, Eltroxin in Australia is expressly said not to be equivalent to other levothyroxine in the same country for dosing purposes.
This sort of confusion was one of the reasons I started my world document.
helvella's medicines documents (UK and Rest of the World) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world. There is now a specific world desiccated thyroid document.
I highly recommend viewing on a computer screen, or a decent sized tablet, rather than a phone. Even I find it less than satisfactory trying to view them on my phone.
helvella - Thyroid Hormone Medicines - UK
The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and also liothyronine available in the UK. Includes injectables and descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, etc. PLUS how to write prescriptions in Appendix F.
dropbox.com/s/bo2jzxucgp9hl...
helvella - World Desiccated Thyroid
Contains details of all known desiccated thyroid products including information about several products not considered to be Natural Desiccated Thyroid (NDT/Desiccated Thyroid Extract/DTE).
dropbox.com/scl/fi/gx6dmz5i...
helvella - Thyroid Hormone Medicines - RotW
Contains details of all levothyroxine, liothyronine and combination products - excluding desiccated thyroid products. Details available vary by country and manufacturer.
dropbox.com/s/dliou4fszbegw...
The link below takes you to a blog page which has direct links to the documents from Dropbox and QR codes to make it easy to access from phones. You will have to scroll down or up to find the link to the document you want.
Last updated 19/07/2024
What time did you take your blood tests? Time of day can massively affect your TSH result. Should be fasted and before 9am where possible. Do you take any supplements containing Biotin? This can also affect results
On NHS To get Levothyroxine my thoughts are you would need to have two consecutive results of TSH 4.8+ (depending on the range) about 12 weeks apart. That’s what I had to do.
Do you have FT4 and FT3 results? If these are below range you may have an argument for replacement.
With Hashimoto’s you are likely to go more hypo with raised TSH within a few weeks/months.
Levo when you are in range could make you feel worse. Over replaced feels awful.
🌱
Great to know, thank you. My T4 is progressively getting lower. 11 last month 10 this month
Oh bless you, if it’s the same range as mine (12-22) I don’t feel well at all under 17-18.
If you don’t get any luck with the GP, you could try Roseway labs, they are a private pharmacy in London who prescribe. You have a call with their pharmacist prescriber who is lovely, super supportive and very knowledgeable. She will suggest something, then email you a payment link to a prescription and it comes in the post. Initial call is about £50 (last time I looked) follow ups are £30 and my prescription for T3 is £75 for 3 months. T4 would be even cheaper, she might suggest a combined one for you, have that idea in your back pocket if needed 🌱
Can I ask is this a separate supplememt I was recommended Armour and its £130 a month that's just to start. I'm guessing higher dose is more money. Are these prices for Armour or is something else. X
I think Armour is more expensive, I don’t know much about it and haven’t considered it as an option, I find all the supplementing and testing so expensive I draw the line somewhere, I get my T4 from NHS and get T3 privately. 🌱
I know thats my other concern. Is all.the blood test cost hundreds of pounds. The medication hormone therapy cost hundreds and I'm.not a millionaire 🤣🤣 . Life is so hard as it is..xx
My doc said she would prescribe me if I want but would rather I try a GF diet first. I don't want to start meds too early but I'm wondering if T4 is 10 mol/l, will I feel a change wirh medication.
I dint really like the " leys see how bad it gets first" mindset.
Range is 10-25
SlowDragon range posted here 🌱
With FT4 at the bottom of range I’d say that’s likely the cause of the symptoms (it would be for me). Diet and nutrition are part of it I agree with you, but personally I find thyroid replacement hormones essential for daily life (and I say that as an organic veg growing, health food eating, herb drying and didn’t take many meds before all this type person). Many with Hashimoto’s can manage for years without taking Levo or NDT or T3 etc, I was late 40s by the time mine really started causing problems. It’s a big deal making the decision and not easy, I hear you. Not helped by knowing the starter doses might make you feel worse some weeks of the increase before you feel better. 🌱
Thabk tou very much, I am 40 as well. I feel my fatigue is affecting my mental health and family.
You could try absolutely strictly gluten free diet for 6-8 weeks and retest thyroid levels
as first step…..see what difference it makes to how you feel
Many of us also benefit from dairy free too…..best trial separately
With Ft4 right at bottom of range you are almost certainly going to need to start Levo soon
But if you want to try nutritional road first ….
Also essential to test and maintain GOOD vitamin D, folate, ferritin and B12 levels
Thanks heaps, very helpful.
what’s the range on Ft4
What time was test done
ALWAYS test thyroid levels early morning, ideally just before 9am, only drink water between waking and test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s
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.
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
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
Low vitamin levels tend to lower TSH, especially low ferritin
So it’s essential to test vitamin levels and improve to optimal levels if necessary
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
nice.org.uk/guidance/ng20/c...
Or buy a test online, about £20
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
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
drknews.com/changing-your-d...
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
pubmed.ncbi.nlm.nih.gov/296...
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
nuclmed.gr/wp/wp-content/up...
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
restartmed.com/hashimotos-g...
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
Post discussing gluten
Eyebrows have started growing again : )
Need Advice Please 
Increased anxiety…
Menopaused. Would starting HRT mean reducing NDT? Has anyone experience of this please?
I’m fine. Really?
