I Was diagnosed with under active thyroid 10 years ago age 50, I have struggled with tiredness my go will not change the 50mg dose of levothyroxine. I have just had it re tested and tsh level is 0.97 I am also anemic come back in the same blood tests so starting iron. Any thoughts please
Underactive thyroid : I Was diagnosed with under... - Thyroid UK
Underactive thyroid
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JUNEO
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Jaydee1507Administrator
Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.
What time of day was your test?
If GP has only tested TSH then thats completely inadequate to see if you are fully replaced. To make a proper assessment we need to see TSH, FT4 & FT3. Often this is only possible by buying a private blood test sadly. Its usually the lab that refuses to test anything other than TSH.
Have you tried asking different GPs for an increase? Asking for a trial increase can often work better. Keep asking and dont give up.
If you are anaemic then that will be contributing to tiredness, also your thyroid hormone wont be able to work well. We need all 4 key vitamins at OPTIMAL levels for thyroid hormones to work properly.
Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...
There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
Be sure to take iron 4 hours away from Levo as it affects absorption. Take iron with orange juice or anything containing vit C to aid absorption.
Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).
Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
Hi thankyou for the reply, I had the blood test at 11am. The following came back as Abnormal liver function, serum tsh, serum ferritin, serum magnesium, b12 folate, urea and electrolytes I received a message from my gp to say I am to start iron tablets for 3 months nothing else. I have had to have these for each of the blood tests since July 2023 as they keep coming back low. Also I had to have a week supply of calcium 4 months ago. I just feel so tired all the time.
Having the test at 9am or earlier where possible can make all the difference as far as TSH level goes and it would have been a little higher. Next blood test try and go for that time slot.
Do you have a copy of your latest vitamin results that you can share with us? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.
If your thyroid hormone levels are too low then it affects gut function and low vitamin levels are the result of this.
How is your diet? Do you eat red meat?
As well as taking iron tablets, increasing iron rich foods in your diet can really help.
Link with ideas for dietary iron:
Most people here need to supplement B12, folate & D3 continuously to get their level to optimal and maintain it there.
Has GP started you on B12 injections if your B12 level was low?
What about folic acid for low folate?
Hi I do have the results of the Abnormal results on my app that I wrote earlier if that helps. I've never had any b12 injections he has always given me 6 weeks supply of ferrous sulphate this time I've been given 3 months supply of 200mg ferrous sulphate?
If you can either screenshot the app results and remove any personal information and doctors name or type out the results for B12, folate & D3.
You likely need to be supplementing them all and can buy over the counter supplements.
Try adding in chicken liver pate a few times a week to up your iron intake.
The PPI Esomeprazole will be further reducing your already low stomach acid caused by low thyroid hormones, so despite a good diet you just cant absorb the vitamins.
I see what your saying thank you I'm just trying to send the results to you I'm not very technical
B12
You will feel a lot less tired once you raise your vitamin levels.
Your B12 level is very low. Do you have symptoms of B12 deficiency? The reference range for B12 is very wide and cut off point too low. theb12society.com/signs-and...
If you do then you should discuss this with your doctor for further tests for Pernicious Anaemia.
If not, then start with a methyl B12 sublingual spray or lozenge for a week, then add a good B complex. Once you run out of the separate B12 just continue with the B complex.
cytoplan.co.uk/vitamin-b12-...
amazon.co.uk/Better-You-Boo...
B complex suggestions: Slightly cheaper options with inactive B6:
amazon.co.uk/Liposomal-Soft...
Contains B6 as P5P an active form:
bigvits.co.uk/thorne-resear...
healf.com/products/basic-b-...
Explanation about the different forms of B6:
helvella.blogspot.com/p/hel...
B complex comparison spreadsheet:
healthunlocked.com/thyroidu...
If GP hasn't tested vit D:
NHS easy postal kit vitamin D test £31 via
Hi I have been going to my doctors for the last 2 months saying I am exhausted sleeping 12 hours a night and falling asleep during the day. My tongue is so sore pins and needles also cramp in my legs and feet for the last 4 months I said to my gp something isn't right please can you donblood tests as he he said I didn't any
I know its really hard to get the help you need when you're that tired. Is there anyone you can take with you to your appointments?
Has GP accepted that your B12 level is on the low side?
It may just be the combination of PPI use and low stomach acid but do press GP to investigate pernicious anaemia.
Is there any way you can reduce or change your PPI to something that will affect your vitamin absorption less?
GPs get almost no training in nutrition so you will need to lead the way at appointments and be persuasive with your GP.
Sore tongue and pins & needles are likely your low B12.
To be honest I got a text message saying your iron is a bit low and to take the prescribed medication for 3 months that's all. I am goingvto speak to my husband and make an appointment to speak to the GP I feel that having so many abnormal results 8 in all needs to be looked at. I am going to see about the ppi tablets to I do struggle with acid reflux I will look into pernicious anemia and mention it to. I haven't felt well for a while dizzy and trembling hands and forgetting things the last few months thankyou for your advicd
Sorry to hear your struggle & glad you've found this site for excellent guidance.I suffered with 'acid reflux' for years then I did a food intolerance test found a few interesting food stuffs not good for me but that I had no pepsin so I ditched the Omeprazole & started taking loads of vitamins as suggested here plus betaine HCL made a big difference obviously you'll need to research for your own tummy problems 🤞good luck with that & yes you have to continue dialogue with GP I did with mine & finally got to see an endocrinologist a good one testing for cortisol levels now appointment next week. Keep researching 👍
Gosh!
You have classic symptoms of b12 deficiency! A full list, and it's long, is available on the PA website. Additionally your serum level is in the 200 to 350 range which suggests deficiency is symptoms present - which they are. Further you're hypo and hypo and b12 deficiency are common co morbidities. Age is another risk factor for b12 deficiency. Finally to put the top hat on it you take PPIs which inhibit b12 uptake.
It seems likely you have b12 deficiency and your health is being compromised. Why didn't your GP make such a simple diagnosis? That's a long story for another time.
Suggest you get on the PA site of HealthUnlocked - there is fantastic advice there.
The dilemma is this. You need a diagnosis and GPS aren't very good at it. You need treatment soon as you will likely deteriorate otherwise. If you start treatment, such as high dose oral b12, this will raise your serum levels and risk the GP declaring you're fine!
Ideally insist on anti body testing - see the PA website for details. Dilemma hear is that it only picks up 50% of cases - so it can confirm b12 deficiency/PA but cannot rule it out.
Probably the best test is a series of b12 injections to see if you respond hopefully your GP will agree to this. See PA HealthUnlocked for lots of details on this.
I wish you the very best.
Thankyou I actually feel I have answers now I thought I was going mad to be honest. I am now loaded with so much information which will help me try to address this I'm so pleased I found this site and again thankyou
I do eat red meat twice a week. I've also been on Esomeprazole for 12 years which I did mention to my gp, I do eat a healthy diet Thankyou
he has always given me 6 weeks supply of ferrous sulphate this time I've been given 3 months supply of 200mg ferrous sulphate
Things it is helpful to know about iron...
When doctors prescribe iron supplements to patients, in my experience they rarely re-test before stopping the prescription. It is quite common for patients to absorb iron poorly, and so three months worth of pills might not be enough to get your ferritin level to optimal.
1) Iron supplements of the type prescribed by doctors in the UK can be bought in pharmacies without prescription. You aren't reliant on what your doctor prescribes if you want to continue taking iron.
2) Having said that, too much iron in the blood is actually poisonous. Excess levels can end up being deposited in various tissues and organs around the body and the body has no way of excreting the excess. Regular testing is essential so that people can stop supplementing at the appropriate time, or can reduce their dose to maintain their ferritin (iron stores) where they want it if it drops rapidly.
3) Under normal circumstances, the body gets rid of iron in women via their periods (if they still have them). Small amounts of iron are lost in defecation.
4) Optimal levels of ferritin are suggested to be between 90 and 110 micrograms/L for people with thyroid disease.
5) The iron supplements prescribed by doctors in the UK are :
Ferrous sulfate : bnf.nice.org.uk/drugs/ferro...
Ferrous fumarate : bnf.nice.org.uk/drugs/ferro...
Ferrous gluconate : bnf.nice.org.uk/drugs/ferro...
Many doctors prescribe ferrous sulfate simply because it is the cheapest supplement. It is often poorly tolerated.
Ferrous fumarate is more popular than ferrous sulfate and ferrous gluconate, because it is better tolerated than the other possibilities.
Ferrous gluconate is rarely prescribed - I don't know why.
The iron pills I've mentioned above are all types of "iron salts".
...
There are other forms of iron supplement available (but not from the NHS). They contain heme / haem iron. They can be bought online. Patients who've tried them have found them to be a far better and more successful type of iron supplement, that raises ferritin levels more quickly than iron salts (which are notoriously slow). Haem supplements do not cause gut irritation like irons salts do and the Three Arrows product has become very popular on the forum. Haem supplements are discussed in these links :
healthunlocked.com/thyroidu...
threearrowsnutra.com/en-uk/...
healthunlocked.com/thyroidu...
...
If ferritin still doesn't rise then the only other method to raise iron that I can think of is an iron infusion. Theoretically the NHS will do these but a referral to haematology would be required and doctors are reluctant to do this - they think iron salts work for everyone. There are private clinics that will do iron infusions for a fee, and they exist around the UK. I don't think GP referrals are required.
...
Testing iron/ferritin...
Doctors will usually test Ferritin and/or a Full Blood Count (FBC) to test iron/ferritin or to check for anaemia. People can become iron deficient long before they become anaemic. Iron deficiency needs to be treated rather than waiting for the patient to become anaemic.
Testing only Ferritin does not give enough information about iron in the blood. The best way to test is an iron panel. They are more expensive than just a Ferritin test or an FBC. But ideally they should be done for anyone taking iron supplements. The best private test I know of is this one - a finger-prick test :
medichecks.com/products/iro...
There is a discount code given here :
thyroiduk.org/testing/priva...
If you choose to do an iron panel please ask for information on how to get the best, most accurate results before doing the test.
Ferrous Gluconate may not be frequently prescribed because it has lower elemental iron per dose compared to sulphate or fumarate.
Yes, I know. I always thought it ought to be useful for patients who struggle to tolerate either the sulfate or the fumarate. As a rule of thumb, the higher the iron content of an iron supplement the fewer people tolerate it.
Gluconate was the only one I could tolerate. I was taking iron tablets for much of my life owing to being a strict vegetarian since birth so I've tried them all. It takes longer to get levels up but there is no point prescribing pills if people cant stomach them.
SlowDragonAdministrator
It’s highly likely your vitamin levels are low because you are on PPI and on inadequate dose of levothyroxine
Low vitamin levels tend to lower TSH (all many medics incorrectly look at)
Essential to improve low B12, low folate and low ferritin
Test vitamin D now
Then retest thyroid levels again in 6-8 weeks
Book early morning test, ideally before 9am, only drinking water between waking and test and last dose Levo 24 hours before test
Insist politely that GP include testing TSH, Ft4 and Ft3
Or test privately (thousands U.K. patients forced to test privately to get full results)
Is your hypothyroidism autoimmune?
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
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)
Lower vitamin levels more common as we get older
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
What vitamin supplements are you taking
Many, many thyroid patients find they need to supplement vitamin D, separate magnesium, separate vitamin B complex continuously
Often initially B12 as well (as you do)
It can take long time to improve low ferritin
Hi thankyou for your reply it's a lot to take in. I am not taking any vitamins only medication I am on is levothyroxine 50mgVenafalexin 37.5 mg for anxiety and depression
Amitriptaline 10 mg for depression
Esomeprazole 40mg for barretts oesophagus
And now the 200mg of iron ferrous sulphate
Your anxiety and depression may be caused by low vitamin and/or minerals levels. Doctors rarely care about or test nutrient levels, and don't do anything to improve them if they are low in range. It's only when they are under range, and the doctor does the right testing to find this out, that you might get a prescription to raise a nutrient. So self-testing and self-treating is, for many of us, the only way to go.
I had a lifetime of low iron and/or ferritin until the last 10 years or so. Females in my extended family are commonly anaemic. When I found out I could buy iron supplements of prescription strength (without a prescription), and I could use private fingerprick testing to get iron panels done, for the first time in my life I could treat iron/ferritin levels for long enough to make a substantial difference to my levels. And miracles happened - my anxiety disappeared and my depression almost completely disappeared.
Your Levo dose is very low, and to have been left on that dose for years is cruelty from your doctor. It would really help us to help you if you could get copies of your TSH, Free T4, and Free T3 results from your GP records, along with the ranges for each result. Also, any nutrient testing you've had in recent years would be helpful too. Then you could post them on here in a new post.
SlowDragonAdministrator
PPI and low vitamin levels
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...
stopthethyroidmadness.com/s...
thyroidpharmacist.com/artic...
How to test your stomach acid levels
healthygut.com/articles/3-t...
meraki-nutrition.co.uk/indi...
huffingtonpost.co.uk/laura-...
lispine.com/blog/10-telling...
Useful post and recipe book
healthunlocked.com/thyroidu...
Ppi like Omeprazole will lower vitamin levels even further
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...
Iron Deficiency and PPI
medpagetoday.com/resource-c...
futurity.org/anemia-proton-...
onlinelibrary.wiley.com/doi...
sciencedirect.com/science/a...
You can’t stop PPI suddenly it needs to be weened off slowly
Probably not until get on higher dose Levo and/or on gluten free diet if your hypothyroidism is autoimmune
SlowDragonAdministrator
vitamin D
Test twice yearly when supplementing
Can test via NHS private testing service
NHS Guidelines on dose vitamin D required
panmerseyapc.nhs.uk/media/2...
GP will often only prescribe to bring vitamin D levels to 50nmol.
Some areas will prescribe to bring levels to 75nmol or even 80nmol
leedsformulary.nhs.uk/docs/...
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
mm.wirral.nhs.uk/document_u...
But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better
pubmed.ncbi.nlm.nih.gov/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.
There’s a version made that also contains vitamin K2 Mk7.
One spray = 1000iu
amazon.co.uk/BetterYou-Dlux...
It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average
Vitamin D may prevent Autoimmune disease
newscientist.com/article/23...
Web links about taking important cofactors - magnesium and Vit K2-MK7
Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine
Long term PPI use tends to lower magnesium levels
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Recipe ideas
bbc.co.uk/food/articles/mag...
Interesting article by Dr Malcolm Kendrick on magnesium
drmalcolmkendrick.org/categ...
Vitamin K2 mk7
betterbones.com/bone-nutrit...
healthline.com/nutrition/vi...
Wow thankyou for all the information I'm going to be doing a lot of reading the next fee days to get my head round everything. One of the things I am struggling with is low concentration also dizziness and shakes mostly my hands sore tongue and of course exhausted. It's a mine field I'm so frustrated I have been saying to my doctor since last July how tired I am could it be my thyroid all he kept saying it's in the guidelines until the last results I've just got back which show a change. But he hasn't mentioned anything about using the dose only the ferrous sulphate
Just to say antidepressants like Venlafaxine and Amytriptyline can cause dizziness and shaking. I tried Amytriptyline 2 years ago, low dose for migraine prevention and felt dreadful on it, shaking and racing heartbeat. But please dont stop taking them,maybe you need a medication review.
Also having low iron and low B12 will be contributing to you feeling ill and tired. Never underestimate how awful they can make you feel.
Thankyou yes I'm so tired everything is an effort the worst it's ever been. I do feel my thyroid is just ignored all I get is it's within the guidelines even though my results at the weekend showing abnormal. I am waiting to speak to a gp to see what they say as I'm not happy 8 abnormal blood results have come back this time and I get 1 message to say start iron for 3 months
hello JUNEO
Sorry to hear you’re so tired I really sympathise. I’ve discovered recently my iron levels have probably been low for most of my adult life and gps will either say I’m ok but not look at other levels that may be low, or just say take iron for a while! If you’re seriously deficient that’s not enough. You could try taking Three Arrows iron that gets recommendations on here and which I’m now taking. For me it’s only raised my ferritin 3 points in a month so I’ve a massive way to go. Im Now taking the bull by the horns and seeing gp next week. Am going to ask for a haematology referral and/or an iron infusion as it will take years otherwise to improve that and I’m nearing 70!! Am not meaning this reply to be about me but rather to encourage you to be really pushy and not just accept three months of iron which you body may well not be able to absorb well. As others have said the low stomach acid with thyroid disorders will inhibit absorption. And it seems quite common to have anaemia or other blood deficiencies with thyroid dysfunctions .
So find the energy to rattle your doctors cage bars loud and clear even if you go home and spend the rest of that day in bed! If you can raise your iron levels well you’ll feel so much better. Keep going, the only way is up💜
Awww thankyou I know what your saying I really appreciate the advice I'm getting. I've struggled for o er a year now and I know I can't keep going on like this it's no quality of life. I hope you get sorted I will definitely stand up for myself thankyou
Two things I wonder about is the quality of testing we are receiving for one and another thing why are they not testing people's iodine and selenium levels. Many people may not be converting T3 to T4 and giving people T4 or T3 replacements may just be mucking up the picture and not giving relief of symptoms and quite possibly harming our thyroids and our whole bodies eventually . I discovered that is what had happened to me after 4 3/4 years of complaining and jumping through hoops and trusting a doctor who wasn't listening . Wish you well. I really do cause I know it isn't fun !
Thankyou this makes so much sense I think there needs to be more training I've got so much to look into thankyou I really appreciate your comment
Hi JUNEO, have you had your B12 tested? I am hypo and also have PA (Pernicious Anaemia). Another cause of fatigue. See if you can get your GP to check it or you can test privately by post i.e. Medichecks. Good luck. Take care.
B12 was tested and low that's what the results show and put me back on ferrous sulphate this time for 3 months. I've been getting low results since last July
Iron sulphate is for low ferritin/ iron. Low B12 needs either high dose B12 tablets or injections.
Thankyou that's really good to know, much to take in I appreciate it
Try looking up high fat carnivore diet on YouTube for healing thyroid. It helps many. And try take beef liver. . It will help iron b12 vitamins naturally. Thanks
Well done..I had to take action too as a picky meat eater all my life and an adrenal burnout in 2017 I'm learning now possibly caused my underactive T. I'm working on healing myself. Learning and very high fat, unsalted butter. I get tired so I swallow frozen liver tiny pieces in the morning and if I sit and have my decaf fatty later first I get tired so me and my hub get out and walk as fast as I can or even light jog no matter what the weather and it helps setting me up for the day..even though I've just started natural meds..desicated thyroid metavive.. i try to stay actice in fresh air as much as i can..look up dr elizabeth bright..fat heals thyroid..and other carnivore sabout diet and lugols iodine ..💪
*fatty butter latte.If you don't know about the liver its on YouTube too but you have to freeze it 2 wks first
Even sometimes 5 mins if that's all I'm able for but helps and clears cob webs. Fat helps sleep too.
Of course, no problem at all 👍
Take your husband , or someone else,with you to GP. sSomehow having a 3rd party there saying "how worried they are, youve not been yourself for ages" etc makes doctors pay attention. A man seems to be effective, wouldn't like to speculate why !🙄Tell GP you've been in touch with Thyroid UK (i.e. us) who have told you NICE / NHS guidelines suggest likely proper dose of LevoT4 should be around 1.6mcg per Kg of bodyweight. So unless you are petite, you might need a trial increase starting at 75mcg dose.
Good luck.
I will my husband said he's coming with me he's not happy with how I am in myself thankyou so much for your advice
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