Hello, please could I ask for your advice. I've had Hashimotos around a decade. Recently I cannot seem to get my dose around the sweet spot for TSH of 1. Last blood test it was at 5 on 100 levothyroxine. Just introduced a further 25 three times a week. As a result I am seriously struggling to cope with my mental capacity and mostly feel I must be headed for Alzeimers. I'm a 49 year old female who had early menopause and I currently take HRT but am at the max dose with not much benefit being felt after the initial boost of being rehormoned! Before Xmas I've been diagnosed with Osteopenia. I'm getting concerned about being one of the drivers on a return trip to France in a couple of weeks as my mind feels unreliable. I am putting things in the fridge that don't belong in there, today I drove past my destination twice before snapping out of a brain fog that clouds my brain day in day out. It is beginning to really worry me. My GP although very enthusiastic offers little to no input on Hypothyroidism. So I just don't know what to do. A friend has suggested iodine however I thought this was thought to be avoided with underactivd thyroid. Any advice would he gratefully received. Thankyou.
Mental function disappearing: Hello, please could... - Thyroid UK
Mental function disappearing
Welcome to the forum
Which brand of levothyroxine is 100mcg and which brand is 25mcg
You might be better cutting 25mcg in half and taking 12.5mcg every day
ESSENTIAL to test vitamin D, folate, ferritin and B12 at least once a year
What vitamin supplements are you currently taking
When were vitamin levels last tested
Has you have Hashimoto’s have you had coeliac blood test done
If not get tested BEFORE considering trial on strictly gluten free diet
Only 5% of Hashimoto’s patients test positive for coeliac, but a further 80% who try strictly gluten free diet find noticeable or significant improvement on gluten free diet…..or it’s absolutely essential
Similarly dairy free diet can also bring benefit
Retest bloods 6-8 weeks after any dose change or brand change in levothyroxine
all thyroid blood tests early morning, ideally just before 9am 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
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
(Doesn’t include thyroid antibodies)
monitormyhealth.org.uk/full...
10% off code here
thyroiduk.org/getting-a-dia...
NHS easy postal kit vitamin D test £29 via
Only do private testing early Monday or Tuesday morning.
Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery
I experienced extremely premature menopause—was in early 30s which means I was perimenopausal in my mid-20s. I was diagnosed with hypothyroidism approximately 15 yrs last. I had already cut out most gluten because I thought I might have a gluten issue. 2 - 3 yrs later I was diagnosed w/ osteoporosis. First DEXA was done in July 2019, I was 50, and my lumbar spine t-score was -3.9. In the spring of 2021, I finally found info about 2 genes linked to Celiac. I had DNA testing done and found I had 1 of the two genes associated with Celiac. I did a gluten challenge (ate gluten for a couple of months—it was not fun) and my gastroenterologist did a endoscopy/biopsy. My villi were fine so I don’t have Celiac but my gastroenterologist and I both agree that I am NCGS (non-celiac gluten sensitive) and I cut out gluten completely—prior to the test I avoided obvious gluten, bread, pasta, cereal, pizza, etc., now, I don’t eat anything even w/ “small” amounts of gluten such as soups thickened with a gluten containing food.
My life is significantly better since cutting gluten. Areas I never thought could be effected by gluten have improved. I was having issues with my knee and after going gluten free the pain in my knee disappeared. I was a life long mail-biter. Tried everything to quit. A few months after quitting gluten, I noticed my nails were long. I haven’t bitten my nails since quitting gluten.
Wow, that's really tough. Have you managed to do anything to halt the osteoporosis? I'm weight training 3 times a week and vit d and researching a good calcium supplement. Best wishes FearFracture, it's a worrying diagnosis to get
Thank you. If you are interested in checking them out, here are by DEXA results for 2019, 2021, and 2022. healthunlocked.com/boneheal...
At the urging of my endocrinologist, who told me my bones were "horrible", I took alendronate for 1.5 years but stopped because it caused digestive tract issues. Then after a 4 month bisphosphonate holiday, I had one zoledronic acid infusion in November 2021. My endocrinologist ordered a 2nd zoledronic acid infusion for me which he expected me to have in November 2022, but I decided not to have it. I didn't really start researching osteoporosis until after I'd had the 1st infusion--prior to having it, I was hyper-focused on figuring out if I had Celiac and getting my teeth check out prior to the infusion--I told my dentist to fill anything that looked like it might turn into something worse because of the potential for ONJ when taking bisphosphonates. To date, I haven't had any major side effects from the infusion; however, once I started doing my own research, I started questioning my endocrinologist.
In January 2022, I joined a gym and I have slowly been increasing the weights that I lift, mostly via the gym equipment (I'm 4'11, weight approximately 106 lbs and I'm now able to lift 240 lbs on the leg press equipment). I also made a lot of changes to my diet and supplements. For instance, I was trying to figure out how I could make my body absorb more calcium, that's when I stumbled upon the fact that the most calcium the body can absorb at one time is 500 mg so I switched from a 600 mg calcium supplement to 200 mg tablets and I now make sure that I am getting smaller doses of calcium throughout that day via diet and supplements and the last thing I take before going to bed at night is a calcium supplement.
I've found an OB/GYN who is willing to start me on HRT--most doctors have said HRT won't help me because it's been too long since I went through menopause. From the posts I have seen on this website, it seems like the healthcare system in England doesn't think it's ever too late to start HRT. I'm considering giving it a go but haven't made up my mind yet.
My most recent research has been on trying to connect the dots between hypothyroidism and osteoporosis. Unfortunately, that left me feeling a bit discouraged but I'm not going to give up. I'm going to keep going to the gym, and, although I don't have any balance issues, everyday I do balance exercises to prevent future issues, and I try to keep in mind something I read in the BJM--the biggest difference between who fractures and who doesn't, isn't who has osteoporosis, but who falls LOL that is what the study showed. It seems that if one can prevent falls that might be 90% of the battle.
I had similar experience…coeliac blood test negative, private endoscopy suggested possibly coeliac. DNA test on NHS …probably not coeliac…..going strictly gluten free in 2016 was revelation
Similar experience going dairy free this year …..more on my profile
I read your bio. Thanks for sharing your experience. It sounds like it has been a long hard process but that you are making progress which is great news.
When I 1st diagnosed myself with a gluten issue around 2016 everyone thought that I was just jumping on the gluten-free bandwagon so it was hard because I had to constantly tell ppl that I couldn't eat bread or pizza or pasta and they were annoyed with my decision to go gluten free.
It all started because I started having skin issues and when I started doing research I found that there was a link between premature menopause and Celiac. When I stopped gluten in 2016, my skin issues ceased. In 2017, I was diagnosed with hypothyroidism and prescribe levothyroxine and thought maybe all the issues I'd been experiencing were related to my thyroid and not gluten and I started eating gluten again and within a few months my skin issues were back, so once again, I quit eating gluten.
It wasn't until I was diagnosed with osteoporosis and I found a new gastroenterologist, who agreed to do the DNA testing which led to the endoscopy/biopsy, that I finally had the answer that I am NCGS and since I have one of the 2 genes associated with Celiac, I could develop Celiac in the future--It's just so helpful to have answers rather than to be left questioning.
I've read that many ppl w/ gluten issues should also avoid dairy. I haven't tried to give it up. Dairy is my main source of calcium via diet and I don't think I can eat enough green leafy vegetables to get enough calcium. There are some ppl that say that dairy hurts bones, but I really don't know what the answer is for me personally so for the moment, I'm sticking with dairy but if I need to give it up at some point, I will.
With everything that you have been through, how are your bones? Have you had a DEXA scan?
Also, do you have an opinion/thoughts on starting HRT decades after menopause. I have found an OB/GYN who is willing to prescribe HRT for me even though I went through menopause over 20 years ago. Most doctors have told me it won't help, but I have seen posts on this website saying that it is never too late to start HRT and if HRT can help my bones, I think I were prefer trying it over taking osteoporosis meds.
A friend has suggested iodine however I thought this was thought to be avoided with underactivd thyroid.
Yes….you are correct…..you don’t need any extra iodine
Levothyroxine contains all the iodine you need
Is your HRT a patch or pills. If pills it’s important to take at least 4 hours away from levothyroxine. Taking HRT frequently results in needing dose increase in levothyroxine
how is your sleep and diet? Have you had any extra stress lately?
Sleep alludes me, cannot switch off enough to be relaxed enough to fall asleep as if I'm running on nervous energy upon getting into bed. Once asleep usually sleep through but ridiculously exhausted every morning.
Come back with new post once you get full thyroid and vitamin results
Frequently strictly gluten free diet brings astonishing improvements …..but brain fog can take 6-12 months to lift
Similarly dairy free…you might not see anything significant for couple months after cutting dairy
They say not to do this, but I watch TV in bed every night--reruns of shows I am familiar with so I don't pay too much attention and can drift off to sleep. I set a timer on the TV so it turns off after I'm asleep. On nights that it takes longer than usual for me to fall asleep, I take 3 mg of melatonin.
Waking up tired can be a sign of sleep apnea hopkinsmedicine.org/health/... If there is a chance you may have sleep apnea, definitely talk to your doctor. It can be very harmful to your health and memory. neurosciencenews.com/cpap-s...
Cancel any driving in France. You are clearly not well enough at the moment for that.
I know x
I felt dire with a TSH of 5, hoping to feel better but was more acutely aware of how far off the mark I was, it’s grim. I hope you are able to improve matters soon.
My amazing GP called this evening and has agreed to all the bloods suggested on here but in six weeks after increasing my levothyroxine to 125mcg per day. Along with some extra ones to rule out any other issues she said. So with a change of estrogen too it's a good start. Also going to sign up with a nutritionist for a 6 week program to reset my gut.
Great news, it’s a huge help if you have a good doctor. Hope it all goes well
☘️🍀☘️
Recently I cannot seem to get my dose around the sweet spot for TSH of 1.
Who decided that your TSH of 1 is your sweet spot? Was it you or a doctor?
The reason I mention it is that quite a lot of us need a TSH below 1 to feel at our best.
I would suggest that you forget your TSH and take a look at your Free T4 and Free T3. I think for most people they are a more reliable measure than TSH, particularly the Free T3.
I went through a lot of IVF and I needed TSH at 1 to not be an issue conceiving. Then came to understand that's where it should be for optimised mental function anyway. Yes I've felt my best when it's slightly under 1.
Hi I am also early menopausal, have just turned 50 and been on HRT patches for two years and diagnosed with hashimotos last year, on lowest dose levothyroxine. I have awful brain fog, loss of strength in hands and various other menopause related issues. It was the short term memory loss that first led me to HRT as it was impacting my work. It did get better but I also still get very easily distracted and 'waylaid' in my thoughts. It will be interesting to hear from others if this is common to thyroid as well as menopause as, like you, I do find it worrying at times.
Oh, I recognise this awful phase, as pennyannie says felt like I was ready for an old peoples home with early onset.
The cross over in symptoms makes it hard to tell which needs an increase, in my case patches didn't have enough umph for me, went to a menopause clinic and got sorted out with body identical estrogen, progesterone and testosterone. Once these levels had been restored I needed to increase my T4 and later on add in T3.
It's all about re-balancing all of your hormones 🤗
healthunlocked.com/thyroidu...
Interesting. I realise now you've said that, that I could possibly not be absorbing it very well as a spray. What form of estrogen are you now on, is it estrogel?
Once you got your female hormones balanced in body ID hormones, how did you then go about sorting out T4 and finally adding T3 please? This could be what I need to do.
Could be! It is certainly a factor, you can only really answer that question with a blood test
I use Lenzetto spray x 3, some consider less strong than the gel (not tried it, not keen on slime 😝) 1 Utrogestan at night and a spot of Testosterone daily, which was a game changer! I found it backed up the estrogen nicely so could be worth investigating, GP's will test this if you say the magic words 'lost libido' 🤗
It was the patches that weren't man enough, at one point I stuck 3 on just to see 🤣maybe the synthetic didn't suit me either but certainly the lack of Testosterone?
Once I'd sorted the sex hormones I needed to up my dose of T4 a little, still a bad converter though even with optimised vits etc, then went on to find I have the wonky DIO2 gene so added in the T3 which was the other missing bit.
Little stepping stones to find the all over balance
Wow, I don't know how you've managed to sort all that out! I'm on 5 pumps Lenzetto, not doing me much good so going to try estradot or evorel patches, opposite to you but I need to know if another format of estrogen will get into me better as 5 pumps is over the top to not feel like superwoman at least!
One very well worth it visit to a menopause clinic
Not recommended for using more than 3 pumps? I did double it for a month, didn't get any benefit, it just supressed my T4 conversion more and I started to get Mucin building up, so it might actually make you feel worse if you are now estrogen dominant which is not a good place to be.
Progesterone is essential for T4 conversion, estrogen will block it to a degree which is why a slight increase in T4 is often necessary, along with the fact you'll be back to doing more
I'd recommend a blood test to get some answers
It was the testosterone I was lacking & the T3
Hello Wilfred and welcome to the forum :
I can totally identify with the symptoms described and I too thought I was dealing with something else and chose Dementia -
My issues were in fact thyroid and when I saw my Free T3 and Free T4 results and ranges the differential was obvious.
T4 - Levothyroxine is a storage hormone and needs to be converted by the body into T3 the active hormone that runs the body and said to be around 4 times more powerful than T4.
In order to fully convert the T4 into T3 we need optimal levels of ferritin, folate, B12 and vitamin D and conversion can also be compromised by inflammation, antibodies, any physiological stress ( emotional or physical ) dieting, depression and ageing.
As you have Hashimoto's, an Auto immune disease, this progressively damages and destroys your thyroid function and why you are taking T4 - Levothyroxine but the thyroid supports you with more than just T4 - and maybe now is the time consider full spectrum thyroid hormone replacement, rather than monotherapy with T4 only medication.
Obviously we need to see a full thyroid panel to help you further and a TSH, FeeT3, Free T4 and the inflammation, antibodies and vitamins and minerals all need to be seen in conjunction to give a clear picture of what is going on.
We can explain all this to you if you share the results and ranges of same when you have them, and share them in a new question/post as this forum keeps moving very fast and we try and answer as thoroughly as possible every question and then need to move on.
If you doctor is unable to run the necessary blood test for you there are companies listed on the Thyroid UK website, which is the charity that supports this website, who can do them for you with some companies offering a nurse home visit option to draw your blood for you which takes the stress out of it. if that helps. thyroiduk.org
Arrange an early as possible blood test in the morning - best during the first half of the week - fast overnight - just take in water - and take your daily dose of T4 after the blood test - if taking any supplements and vitamins and minerals leave this off for around 7 days so we measure what your body is holding on to rather than what you have just taken.
We all need to do this full thyroid panel at least once so we have bench numbers to work from in order to start the process of learning what we can do for ourselves to rebuild and reclaim our health and well being.
You might like to read around Hashimoto's AI Disease = though if with that awful brain fog and clouded thought process you may need to read anything and everything several times before anything registers and then start to doubt yourself anyway - !!!
Thankyou so so much, to all of you. I feel a bit overwhelmed to have finally received top notch feedback and advice. So shall I pay for a medichecks full Thyroid panel asap? With my v recent bloodwork for my osteopenia diagnosis my Vit D came back as 78 nmol/l which I was advised is optimal?
I was post menopausal on my 44th birthday having been full on peri since at least 38 and feel I've been wrangling with a very unstable roller coaster Thyroid function ever since. I'm on Lenzetto spray for estrogen, max dose, Utrogestin orally for progesterone and Androfemme for testosterone. Its definitely not cutting the mustard like it did in the honeymoon phase after initially going on it which leads me to think how impossible an up hill struggle it is to balance all 3 female hormones alongside my Thyroid as like you say the crossover and duplication in symptoms is not funny!
Should my GP do all of the Thyroid bloods once or twice annually along with the vits and minerals you mentioned as part of the nhs service to properly look after hypothyroid patients or should I be paying myself as above?
Either way I'll open a new question when I get the results.
Thankyou all so much 💓
I am post RAI thyroid ablation in 2005 for Graves Disease and had to pay the NHS for T3 and T4 readings through my surgery and was refused all the vitamins and minerals back in 2016/17 when I fell into this amazing forum researching low ferritin the only flagged result after over 2 years of various O/P appointments with no resolve as to my health issues.
I then found out how I can arrange the blood test without alienating myself further from my NHS doctor and I have chosen to go my own way and go through Medichecks as they have a nurse home visit service in my county.
Now some 5 years on I self medicate and just arrange a yearly full thyroid panel to include everything but mainly for the vitamins and mineral results as I still need to maintain these levels and as I feel fine I know my T3 is at a level that works for me.
I've no knowledge of HRT or anything else ( now 75 ) though read some forum members find they seem to need an increase in thyroid hormone replacement when HRT is introduced.
Of course! I remember now, when I had a ton of IVF I was told I'd need to increase my thyroxine because of the extra estrogen. Bingo! I'll look into this thankyou so much!
I would still invest in a full thyroid panel as with Hashimoto's your gland will become less productive over time as this is the course this AI disease takes until such time as your thyroid gland becomes too damaged to function.
Not exactly sure what RAI Thyroid ablation is...is that total removal? That's sounds very difficult to have gone through, I hope you're functioning OK now. It sounds like you've taken it all under your own control which is admirable. I do struggle to get my brain around how all the different Thyroid T3s and free T3s etc all work, especially when you feel like the ability to use your brain has long since gone down the plug hole! Best wishes pennyannie x
Radio Active Iodine- which slowly burns the thyroid out in situ rendering the patient primary hypothyroid.
You ingest this toxic substance and the leaflets and doctors tell you will be fine :-
most recent research :- ncbi.nlm.nih.gov/pubmed/306...
and it is still the first and sometimes only line of treatment offered ?
Should my GP do all of the Thyroid bloods once or twice annually along with the vits and minerals you mentioned as part of the nhs service
Be nice if they did
But extremely unlikely
Testing just TSH is all many/most patients get these days
You will need to test privately yourself at least once a year
Monitor My Health Is cheapest for thyroid and vitamins
Medichecks is cheapest for thyroid including antibodies and vitamins
Cheapest option for just TSH, FT4 and FT3 - £29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
(Doesn’t include thyroid antibodies)
monitormyhealth.org.uk/full...
10% off code here
thyroiduk.org/getting-a-dia...
List of money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Come back with new post once you get results
This is extremely helpful, thankyou.
A lack of B12 can cause brain fog too. Get it measured before any B vitamin supplements are taken because it gives you a false high before diagnosis then months without any being taken before a true low level or diagnosis result. Some folk can’t utilise B12 in their diet due to pernicious anemia or a non meat diet and need it injected . Good luck😎
Will do. I'm pescatarian - does that mean oral B12 won't work? I think injections are v frequent if you go down that road? Thankyou 🤗
I only eat fish too. Some people suffer pernicious anaemia because they don’t make intrinsic factor to utilise the b12 in their diet, others don’t get enough due to diet. The gp can test for the former to rule that out. It’s complicated and you can Google lots on this. Or you can join the forum on here.
They wouldn’t give you the injections unless proven. Then it’s every two to three monthly.
I too think you need to get your b12 checked, just to make sure. Do not rely on doctors to know everything about a deficiency/pernicious anemia. In fact you may be given erroneous information, so read up.
If you have an absorption issue it is irrelevant what your diet looks like.
Here are some concise and informative links -
stichtingb12tekort.nl/engli...
stichtingb12tekort.nl/engli...
stichtingb12tekort.nl/engli...
All the best to you.
I agree with others here re. B12 deficiency, which is especially indicated from your low meat diet, difficulty conceiving and thyroid connection —it can often run in families. Dr J Chandy, the PA Society and Tracey Witty have very informative websites for more information, Litatamon
The BMJ research document will also tell you it is very common and that there is no reliable test, so assessing history and symptoms is more reliable. Important not to have been supplementing before testing.
I would ask for your estrogen to be tested. I was on a very high dose patch as I had symptoms just like yours that weren’t resolving. It turned out I was absorbing the patch very well at all. I switched to a smaller dose gel and my levels tripled within a month, made a huge difference! Once estrogen was optimised I added in testosterone and felt almost human again until my thyroid kicked off 🤷🏼♀️ good luck x
Thankyou, so helpful. Doctor calling back this afternoon. Best wishes x
Just quick queries, how did you know it was your Thyroid that kicked off again and that it wasn't still your estrogen etc still fluctuating? After 2 years on hrt I've found I'm completely in the dark as to where menopausally deficient hormone symptoms end and Thyroid imbalanced levels begin as the symptoms are pretty much identical. I'm guessing repeated blood test after each and every dose change on all.
my hrt dosing was through blood tests and general symptoms and when I felt like ‘me’ again which is hard to describe but you will know when you know. My gp regularly tested me to get me to a good level where all my symptoms eased, everything that is except my fatigue. It became apparent that wasn’t changing with anything hrt which is when she did full bloods and saw my thyroid was off. A lot of GPS won’t do hormone blood tests but fortunately mine has a special interest in meno. You can get your levels checked privately if your gp won’t help. It really helps to see if you’re absorbing correctly.
Yes my GP just agreed to mine thankfully x
Over weight with Levo or HRT
Help!!! Please. Trying to work out when to take split dose along with food and other tablets.
Adrenal function test results - saliva
trouble sleeping 
Thyroid function test
