Hi everyone, quick rundown... diagnosed dec 2020 hypothyroidism, prescribed 50mcg Levo. Scan confirmed thyroiditis.appt with Endo who requested my bloods to see if Hashimoto's, Tests redone last week. So had text from one dr to have bloods redone in 3months 🤷♀️ ... so I rang to see what results where , spoke to a different GP who increased Levo by 25mcg. Was then contact by yet another GP who I then asked about the Hashimoto's test and was then told " yes it's likely you have it " no explanation nothing 😡 and I'm getting more confused by the minute ... ordered 2 books online to research as I'm still struggling with symptoms 😔 ... oh and I asked Endo if I may need vitamin supplements and was told a straight no and that the Levo will sort out any ongoing issues.. sorry for the long post, I've added my results , still being a newbie it's still so confusing . Been on the sofa all day "again" with joint, neck and shoulder pain ( which the GP has said is not related to thyroid and referred me to physio) ...TIA xx
Hi , any advice for pain. Relief 😟: Hi everyone... - Thyroid UK
Hi , any advice for pain. Relief 😟
So you are now on 75mcg levothyroxine daily after these results
Bloods should be retested 6-8 weeks after each dose increase
75mcg is only one step up from starter dose. You will need further increases in levothyroxine over coming months
Which brand of levothyroxine are you currently taking
Many people find different brands are not interchangeable
Essential to test vitamin D, folate, ferritin and B12
Have you had these tested yet
What vitamin supplements are you currently taking
High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s
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 with Hashimoto’s 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
healthcheckshop.co.uk/store...?
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...
restartmed.com/hashimotos-g...
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
ncbi.nlm.nih.gov/pubmed/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
ncbi.nlm.nih.gov/pubmed/300...
The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease
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.
Come back with new post once you get vitamin results
And thyroid retested after 6-8 weeks on 75mcg levothyroxine
Thank you for your reply , yes I'm currently now on 75mcg but because I was already given a new repeat of 50 mcg ( mercury) she gave me the 25mcg top up ( wockhardt) to take together. I was prescribed ferrous fumarate 210mg twice a day but have now been told to reduce to once a day. And to retest bloods in 3 month. I have so far cut out Dairy and sugars ( only noticing less of stomach bloating ) but I've only been active with this diet for the last month or so. I asked about checking vitamin levels and was told " that's nothing to do with it " and was just reminded that the right dose of Levo will sort it out and to go see a physio as it's probably down to my posture 🤷♀️
Sorry also been pescribed naproxen for pain relief and omeprazole to take alongside but try and withhold unless I'm desperate 🥺
Majority of Hashimoto’s patients have LOW stomach acid, not high acid
Omeprazole is PPI to treat high stomach acid
Low stomach acid can be a common hypothyroid issue
Thousands of posts on here about low stomach acid
healthunlocked.com/search/p...
Web links re low stomach acid and reflux and hypothyroidism
nutritionjersey.com/high-or...
articles.mercola.com/sites/...
thyroidpharmacist.com/artic...
stopthethyroidmadness.com/s...
healthygut.com/articles/3-t...
naturalendocrinesolutions.c...
Protect your teeth if using ACV with mother
healthunlocked.com/thyroidu...
Ppi tend to lower vitamin levels even further
If you must take, then taking as faraway from levothyroxine as possible
gov.uk/drug-safety-update/p...
webmd.com/heartburn-gerd/ne...
pharmacytimes.com/publicati...
PPI and increased risk T2 diabetes
gut.bmj.com/content/early/2...
Wow I never knew 😵 , I take my Levo in the evenings ( as I was always clock watching with my iron supplements and other medication ( 10mg amitriptyline and 20mg propranolol) so take Omerprazole in the morning. My husband has been on omeprazole for the last 25yrs due to barrett's esophagus and has just been told he is borderline diabetic 🤔 ....
Well like I said I only take them when needed , but think I will now stick to paracetamol and a hot water bottle !!
Is hubby hypo too ?
No but he does have other health issues , actually he does have to have his bloods retested in the next week or so for blood pressure and cholesterol, I wonder if they did check his thyroid 🤔
Rare for any man to get thyroid levels tested on NHS.
They tend to think it’s exclusively female disease...it isn’t
High cholesterol is linked to being hypothyroid
Good to know , it's very strange, at the beginning he was almost mimicking my symptoms and I did ask if they checked his thyroid 🤔 but he didnt know , maybe this also is worth investigating !
Many partners of Hashimoto’s patients also have Hashimoto’s.....
Is that more than a coincidence...who knows
Of course a thyroid patient is more likely to push to get partner tested
Hashimoto’s can be triggered by h pylori
They may well have tested his thyroid but only the TSH - which is secreted by the Pituitary Gland. TSH = Thyroid Stimulating Hormone & tells the thyroid to produce T4 - a storage hormone. T4 as you know needs to convert into the ACTIVE Thyroid hormone T3 - needed in every cell of the body. Very rarely tested in the NHS and so people remain undiagnosed and other conditions diagnosed needing several medications.
Private testing in the comfort of your home would be best ...
You are legally entitled to have copies of all test results - so ask at Reception.
Sounds like a plan !! I do have my results and will definately look into getting hold of my husbands aswell as blood pressure and cholesterol he has also been suffering like me cold hands and feet, white fingers and has itchy and dry skin ... as soon as I get hold of his results I will post them and maybe you can guide me , I will have both of our tests for thyroid and vitamins done privately as it's very difficult with the drs at the moment and I would rather be armed with the relevant information when I do speak to our main GP . Thank you so much for your time !
Put your results in a new post so more people see them and tag me - in case I miss your post !
Will do 👍🙂
If you get vitamins at GOOD levels and trial strictly gluten free diet, likely to see significant improvements in gut function
Taking levothyroxine at bedtime is often more effective anyway
Why are you prescribed propranolol?
Headaches? Anxiety?
Do you take this every day, or only occasionally?
Propranolol slows uptake and conversion of levothyroxine from Ft4 to Ft3
Propranolol is used to treat hyperthyroid patients
You can’t just stop taking propranolol. You need to ween off it incredibly slowly. Reducing dose by max 5mg and then wait 6 weeks before reducing further
Propranolol also tends to lower magnesium levels too
Low magnesium and low vitamin D go together
(I was stuck inappropriately on propranolol 20 years)
Every day , Again , I never knew this about Propranolol.
I have been taking this medication for anxiety / headaches / palpitations for the last 21 years or more ( I had a 2 yr break before that ) .. so in total about 25yrs ! ... and when asking the GP was there any longterm effects was told no as it is only a minimal amount and would cause more " anxiety " stopping them. I will definately look into reducing my dosage ( over time ) 👍 ... thank you !
Anxiety is EXTREMELY common hypothyroid symptom
Headaches are also extremely common hypothyroid symptom
Personally I found that going absolutely strictly gluten free significantly reduced anxiety and I was able to finally ween off propranolol (was on 40mg as 4 x 10mg 20 years)
More on my profile
You may want to wait to ween off completely until on slightly higher dose levothyroxine
Propranolol is slowing down how you are using too small a dose levothyroxine.
Get use to higher dose levothyroxine first
Only make one change at a time
hi , so it's a good job you rang to chase the bloods up.. and increasing to 75mcg is the right thing to do , because the TSH was still 5.5 , and the fT4 was still low.
You should make an appointment to get bloods retested after at least 6 weeks on 75mcg to see what your levels are then.
And it's quite likely you will still need further increases.
You can expect to feel up and down for a few months. Until you are on the right dose, it's not unusual to feel a bit better for a few weeks on a higher dose , and then feel less good again, So don't be upset if that happens. it takes the body a long time to end up running on not enough thyroid hormones , and it takes it a long time to work properly once they are replaced.
The first GP text was just looking at the lab comment's which would have been correct if the lab had not been told you were already taking Levo, but that first Gp should have known you'd just been started on levo from your notes , and so should have told you to increase dose as TSH still too high for someone on Levo.
The positive TPOab do confirm Autoimmune hypothyroidism as the cause.
It's not unusual for GP's to have nothing to say about it, as they don't have a treatment for it. other than to replace the low T4 with Levo, They treat all hypothyroidism the same regardless of cause , and the most common cause is hashimoto's (autoimmune hypothyroid)
Sometimes you'll get a basic explanation like "your immune system is attacking your thyroid" but it seems GP you spoke to couldn't even come up with that much.
It's quite possible regardless of what GP said, that your joint pains will improve gradually once on full dose of levo, but i'd take the physio anyway , i have found some NHS physio's to be extremely good, and have learned a few things from them that have really helped me with recurrant issues, so i'ts probably not a waste of time going.
I'd get your advice about vitamins from here rather than endo/gp... i once had an otherwise good GP who didn't even suggest i should reduce my sugar intake when i admitted to more or less living on it..... they don't teach the about nutrition , and they don't recognise vitamin difficiencies as an issue until they are really really low.
so as you've learned already ..... getting optimum treatment for hypothyroidism , rather than just a basic dose of levo and being left to get on with it ,is a DIY situation.
But if you have patience with your body while it get's rebalanced, and continue to learn all you can , you will improve.
Well done for avoiding getting left on 50 mcg for 3 months... count that as your first success, and i hope you feel some improvement from 75mcg fairly soon.
Thank you so much for your reply 🙏 , yes I must admit when I just had a text for retest of bloods in 3months I nearly fell over 🥺 ( but to be fair I'm not a lover of this GP anyway ) so when I contacted the surgery I asked for my preferred GP to contact me , which she did , she then increased to 75mcg straight away. It's only been a week so not expecting miracles just yet but obviously my concern is waiting 3 months for a retest , maybe I should just ring and push them for the 6-8 week mark as recommended. I'm certainly not a pushover and will demand it lol , it's just the more information I have the more punch I've got !! Have ordered some books online to have a read up and absorb as much as i can ( saying that my brain is all over the shop at the moment so gonna have to peruse multiple times no doubt 🙈) .. thank you. And maybe get vitamin tests done privately as long as the GP acts on them or just buy them myself 👍
Yes ... welcome to the wonderful world of reading the same sentence 4 times and then forgetting the previous one
Given how much we have all managed to learn and understand about thyroid metabolism despite having 'brain wandering slowly in the fog' disease .. i think that proves that we're all pretty damn clever really ... which must be many Endocrinologist's are scared of us and don't want to hand over our blood results
Absolutely , I am determined to learn as much as I can ( memory permitting 😂) .. thank you so much for your advice , it's very much appreciated 🤗
Work at improving low vitamin levels and trying strictly gluten free diet
It takes minimum 6-8 weeks for each dose increase in levothyroxine to have full effect
Make sure you book retest as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Likely to need at least another 25mcg dose increase (unless you’re extremely petite)
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
NICE guidelines on full replacement dose
nice.org.uk/guidance/ng145/...
1.3.6
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.
Also here
cks.nice.org.uk/topics/hypo...
gp-update.co.uk/Latest-Upda...
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.
BMJ also clear on dose required
bestpractice.bmj.com/topics...
I wasn't given any advice from GP with regards to not taking my Levo before test , so took as normal 🥺 . And no unfortunately have put on another 2 stone since Sept of last year so am a voluptuous size 16 , 14 stone bird so maybe an increase is likely ( not that I actually mind , I'm not gonna start fad dieting ) at 53 I'm past that! So far no trouble stomach wise just joint pain and brain fog the main culprits but it can disable me for the while day 😔 sofa and Netflix am actually sick to the back teeth of it to be honest , hence the purchasing of some knowledgable books !!
So you are likely to need at least 2 further increases in dose levothyroxine
14 stone = 89 kilo
thecalculatorsite.com/conve...
89 kilo = 142.4mcg as likely daily dose you will need to slowly increase levothyroxine up to
142.4 x 7 = 996.8mcg per week
137.5 x 5 days week and 150mcg 2 days week
Or something similar
Assuming you can tolerate full increase in dose
We need optimal vitamin levels for good conversion of levothyroxine (Ft4) into active hormone (Ft3)
Oh I see okay , so shall I push for my retest to be done in the 6-8 week margin rather than wait the 3 month?
I wouldn’t rush (unless you feel dreadful)
Perhaps look at 8-10 weeks
Meanwhile get coeliac blood test and vitamin D, folate, B12 tested
Come back with new post once you get vitamin results
Assuming coeliac test is negative, you can immediately trial strictly gluten free diet
Perfect , I have screen shot so I know what to ask for , I can't thank you enough for your time and advice , and yes definately i will post with an update as soon as i have one , thank you!
So you're clearly under medicated from these tests - after 6 weeks on new dose test again but likely you'll need another increase to get t4 and T3 higher in range and symptoms sorted.
Yes am definately going to at 6 to 8 week timeline rather than the 3 months , fingers crossed I start to see some benefit even it's just a little ... it gets terribly draining and I dont want to spiral into a depression , thank you so much for your time 🙂
Have you had coeliac blood test done yet
Are you now on absolutely strictly gluten free diet?
Over 80% of Hashimoto’s patients find strictly gluten free diet helps or is absolutely essential
Have you managed to VERY slowly reduce/stop propranolol?
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