Hi all hope you are all ok. I apologise this is a long post, sit down with a drink before you start Or ignore if it’s too much 🤣
Some may remember I posted in December (I think) as I had seen a private Endo who told me after 30 years of being Hypothyroid I was now Hyperthyroid (I know, impossible right?) I had the following blood tests at that time.
TSH always comes back as <0.01
August 23 Taking 17mcg
T4. 22.7. (12 - 22 pmol /L)
T3. 3.6. (3.10 - 6. 80 pmol/L
December 23. Taking 175 Mon-Thurs and 150mcg Fri-Su
T4. 32.7. (12 - 22 pmol /L)
T3. 4.5. (3.10 - 6. 80 pmol/L 32.7
I had also lost 4 stone in weight in a short time which was unintentional and I was looking for answers to that problem.
I think it was one of the moderators who told me to get a full blood work up.
So, I reduced my levothyroxine yet again to 150mcg per day, waited 7 weeks and had my GP run all of the bloods suggested. It was a fasting 9am test no Levo for 24 hours.
The results last week were:
TSH. <0.01
Free T4. 31.4
Free T3. 4.4
STTL. 0.5. range 0 - 5
Thy Peroxide. 9. (0-34)
Cortisol. 445. (133-527)
B12. 638. (197-771) ** on meds
Folate. 8.3. (4.4 - 19.3)
Vitamin D. 122. (50 - 144). On meds
Phosphate 0.82. (0.80 - 1.5)
Parietal Cell
Antibodies. POSITIVE
** B12 was 1476 in December!!!!! 😳
Whew!
As you can see despite reducing my Levo there has been very little movement in Free T4 and free T3. However, I was previously feeling ok but now I am having symptoms again, feeling cold all of the time, losing hair, sleeping 11 hours at night and feeling tired all day. Aching all over, constipated etc.
plus, usually when you reduce Levothyroxine you put weight on where I am still losing weight at the rate of 1 LB a week
Does anyone know if it is true that lack of Oestrogen reduces TSH? I read that somewhere but my TSH graph seems to bear it out TSH was high until menopause then dropped considerably. It went up again when I had Breast Cancer which was totally caused by Oestrogen. I then took Oestrogen blockers for a few years and TSH went down to <0.01 in 2012 and stayed that way ever since
If you have managed to read this tome to the end, well done you deserve a medal!!🥇
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irishacres
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Do you always get same brand levothyroxine at each prescription
Do you take levothyroxine on its own, on empty stomach then nothing apart from water for at least an hour after
Do you normally take waking or bedtime
No other vitamins or medications within 2 hours
Some like vitamin D tablets, magnesium, iron, calcium, HRT at least 4 hours away
Most recent results
No iron or ferritin results ?
Hair loss often linked to low iron/ferritin
Exactly what vitamin supplements are you taking
Vitamin D good
Folate could be better
Your Ft4 is too high
Your Ft3 is too low
For what ever reason your conversion of Ft4 to Ft3 has become very poor
Likely to need addition of T3 prescribed alongside a further reduction in levothyroxine
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations
Hello SlowDragon hope you are well. Thanks for your reply I will try and cover everything below.
The private Endo I saw is still in touch as he asked for more info. Because I am relaying this to NHS ENT the ENT is seeing me on 21st with a view to possible op as I have neck lumps and a very small thyroid.
No private doctor will put you on his NHS list now as that’s what a lot of people are doing to jump the NHS list.
I was on TEVA brand for 30 years without problems but my doctor stopped dispensing and moved me to a pharmacy that changed from TEVA to Mercury Pharma without telling me. That’s when my numbers went crazy. I have now found a pharmacy to dispense TEVA but I haven’t started it yet.
I take my Levo in the am
iron was. 12.8. (5.8 - 34.5)
Ferritin. 46.9. (15 - 150)
The only vitamins I take are Vit D 800
I have B12 injections every 3 months
My weight now is 46.72 kg. 12 months ago I was 7438kg most lost in last 6 months
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Ferritin 46.9 ug/L (30 - 150) 14.1%
iron 12.8 (5.8 - 34.5) 24.4%
Look at increasing iron rich foods in diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thank you for your incredible patience while you have been awaiting the outcome of our ferritin reference range review. We conducted this with Inuvi lab, which has now changed the reference ranges to the following:
Females 18 ≤ age < 40. 30 to 180
Females 40 ≤ age < 50. 30 to 207
Females 50 ≤ age < 60. 30 to 264
Females Age ≥ 60. 30 to 332
Males 18 ≤ age < 40 30 to 442
Males Age ≥ 40 30 to 518
The lower limits of 30 are by the NICE threshold of <30 for iron deficiency. Our review of Medichecks data has determined the upper limits. This retrospective study used a large
So my Ferritin range should be 30-332 and the range shown was 15-150! So at 46.9 that is quite low. They obviously didn’t take my age into account.
I was also tested for Parietal Cell Antibodies which could be Pernicious anaemia.
For the 23 years at my old practice I had low iron. I used to go for an iron infusion which would then test high but as I was on monthly blood tests then I used to see it halve the next month and within 6 months had to go for another infusion. This was the pattern for years. But since moving to my current practice my levels go up and down which they have never done before. The ranges have changed so I’m a bit lost with this now. It doesn’t make sense.
Also, as I am now at a normal weight for my height I cannot understand why my cholesterol is still high at 5. 49 mmol/L )the range being 0 - 4. I would expect my GP to be on at my about that but she only ever bothers with the thyroid. I don’t understand why my cholesterol is high as I always eat fresh food no fats no greasy food, no take—a-ways, I have IBS so am very careful with the foods I eat.
I also have auto-immune conditions I.e Sjorgrens Syndrome, vitiligo and psoriasis
Thank you for all the websites I will have plenty of reading to do in the morning. Thank you so much for your in depth replies I really appreciate your time and analysis. Bless you
irishacres I have low sometimes under range levels of FT3 and have had no cholesterol problems as of last check up May 2023 … never had and have checks annually over the last decade but my blood sugar can creep a bit … I don’t think every person’s low FT3 is causing cholesterol problems, certainly not in my case.
I’m pretty sure only certain amount of cholesterol can be helped by diet alone and it’s predominantly a genetic issue and if you read Dr Aseem Malholtra (cardiologist) take on cholesterol I wouldn’t worry too much about it as long everything else has been checked out.
I did ask for them to test for Coeliac disease but I don’t know what test it is shown as. I had so many bloods done I do t recognise some. Can you tell me what it would be listed as on my blood results please ?
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances……rather than coeliac
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
🤣🤣🤣 Yes typical me I have difficulty typing because I have a tremor. It takes me ages to type, and predictive text doesn’t help. It should have read 74.38
No trust me it was fat and muscle I lost. If you looked at me sideways you would hardly see me. 28kg loss can’t all be water. I went from dress size 16-18 to size 8. Over 12 months. Even Christmas I tucked into all he usual Christmas Fayre and LOST weight all at the same time as reducing my Levothyroxine, when normally I would put weight on. Now I have awful saggy skin to replace the fat 😳
I lost over 30 kilos of water-weight in hospital on a duiretic drip for two weeks. Don't know exactly how much I lost because I'd stopped weighing myself when I reached 130 kilos. I'd lost a bit before going into hospital, but don't know how much, and when I came out I weighed about 75 kilos. It was all water and you could count my ribs!
So, you have positive antibodies and a shrunken thyroid? Then my guess would be that you have Ord's Thyroiditis. And that's why your FT4 is so high, you're having a 'hyper' swing, which is what happens when you have Autoimmune Thyroiditis - Ord's or Hashi's.
Also, as I am now at a normal weight for my height I cannot understand why my cholesterol is still high at 5. 49 mmol/L )the range being 0 - 4.
Cholesterol levels have nothing to do with your weight nor your diet. It is high because your FT3 is too low.
Cholesterol is made in the liver - because the body needs it - and the liver keeps the level steady by making more the less you ingest, and vice versa. However, when T3 is low, the body cannot process cholesterol correctly and it tends to build up in the blood. Nothing to worry about in itself, but you do need that FT3 higher.
My weight now is 46.72 kg. 12 months ago I was 7438kg most lost in last 6 months
So you are now just over 7 stones or 100 pounds. That is a very dramatic weight loss. Any decent doctor should be looking for the reason why. Rapid weight loss isn’t good for you. You lose muscle as well as fat.
It could be coeliacs that can lead to rapid weight loss and other symptoms you have and you should definitely get it tested. You say you had breast cancer before. Alongside doing all the other things suggested here, I think you should remind the GP of this fact and insist on a thorough investigation.
Thank you. I have had full body scan re weight loss. It was reported on in 1 week which was quick because they said 4-5 weeks unless they found anything. It was sent by courier to my GP last week but they said they have still not received it. I phoned CT admin today and they said they would email it to GP this morning. So I won’t accept any more excuses from them. My GP works part time but she is in tomorrow so I will be on the phone at 8am in the morning to get an appointment 😡
Thank you. I hadn’t thought about needing less Levo because I’m at a much lower weight but it makes a lot of sense. I will ask Endo to look at that. Reducing by 25mg didn’t do anything.
My tremor is nothing to do with my thyroid. It is a functional motor tremor that I’ve had since 2013.
In answer your other questions. I was and still are taking a lot of meds but the Endo and ENT consultant don’t think my weight loss is anything to do with my thyroid as it’s 27kg loss
My CT full body scan results are at my GPs now it’s just a question of trying to get hold of her hopefully that will give answers for the weight loss
My current results are in my original post together with those for Dec and Aug 23 It was only in August that my T4 increased and then only by 0.7
I’m wondering if my T4 has increased because the pharmacy changed my brand from TEVA to Mercury Pharma I have always taken TEVA but because I have my meds in a cassette I don’t know what brands they were giving me when I saw a post on here about people having problems with TEVA which I have taken for 30 years without problem that I asked what brand I was taking. It was only recently that I found this out and quickly asked for it to be changed to TEVA Now I have them prescribed and am picking them up tomorrow Hopefully I can retest in 8 weeks and they will go back to normal
I have an ENT appointment on 21/2 and Endo appointment on 27/2 so hopefully things can be worked out
There has been, as usual, a lot of very good suggestions on here Particularly from you SlowDragon and GreyGoose
Thank you all so much for your advice
I will update when I have some answers and I can now go to the Consultants armed with much more knowledge and questions for them 😄
hiya - after menopause I had to reduce thyroxine from 200mcg down to 100 over a few years. I had classic hypo symptoms all the time despite high t4 low tsh and I was referred to endo and am now on t4/t3 combination and all is well. I have easy pill based treatment for metastatic breast cancer ie full hormone deprivation and am out walking most days but nothing much has changed ie weight. So make sure the docs investigate your weight loss and meanwhile follow the good advice from others on here re dietary issues/coeliac inflammation.
Thanks bikebabe that’s really interesting and good to know. I had a full body scan for possible reason for weight loss that was reported and sent out to my GP within a week, which was very quick but my GP says she hasn’t had it! I phoned CT admin today and they are going to email it today so they will have no excuse. They said it had been sent by courier last week. I waited for the CT since November then had to phone myself as to why I hadn’t had an appointment and they gave me an appointment for a few days later!! To say I am frustrated is an understatement 🥺😡
You mention the swing from hypo to hyper It’s not unknown and from what I’ve read is related to being over medicated I’m experiencing a lot of the similar symptoms to you but can’t even get an appointment with my gp let alone endo My gp dismissed my symptoms four years ago as ‘definitely not related to Hashimoto’s and autoimmune’ I know better but have no way of getting to see anyone Hope you fare better
Hi. I couldn’t get an Endo appointment either and decided to have one private consult. He listened unlike my NHS Endo. I know he was being paid but for 50 minute consult it was worth it. He even followed up with my GP asking for past history and blood tests. When I sent him my current bloods he asked to see me again, because a lot were out of range. So I will see him in week. I had an 2 week wait appointment with an ENT last month and he was going to discharge me until I saw the NHS Endo! That keeps being put off by the doctors strike so goodness only knows when that will be. I sent the ENT consultant a copy of the private Endo’s letter and now he is seeing me next week! It’s so worth going private at least for an initial consult it has speeded everything up and I will now get a proper discussion on my bloods which my GP seems reluctant to do! I phoned at 8am this morning for a phone consult with my GP to discuss my test results I got a text message with the one blood test saying normal! I phoned back and said it was my CT scan results I wanted. They have had them for a week and was told “they have been filled so they must be ok!!!!!”
Seriously you can’t make it up! I was told to phone the results line tomorrow and if necessary I can make an appointment to see the GP. This was for a 2 week wait scan and I was told I would get the results in 4-5 weeks. If there is anything wrong they would send it earlier. They reported on it in 10 days sent by courier to my GP last week and my surgery are telling me there’s nothing wrong! 😡😡😡
thanks for the info might give it a try Went for annual thyroid blood test today I asked what tests were ordered ‘just TSH’ and as we all know that is absolutely useless It’s so frustrating
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Updated results - not sure what to do next?
New to the group, guidance on results appreciated
Update to Previous Thread with Results
Update, new GP bloods results 
