I have been taking iron 20mg for a year now and vit D 2000iu for a year now
I eat everthing
Typical diet
Porridge milk honey berries
Eggs on gluten free toast
Pork chop jacket potato salad butter
Yogurt
Homemade rock cake gluten free
Lots of tea decafs after 12
So nice and healthy well I try 😬😂
I had TPO and TGAB both normal range haven’t had the lab files yet so haven’t had actual numbers but on the bio dash board they have no attention and in range
ranges do you mean the top and bottom allowed? These are private and the range is different to the NHS but not greatly so
This looks like a classic case of Central hypo. Both your FT4 and FT3 are below range but your TSH is only slightly raised.
Central Hypo is when the problem comes from the hypothalamus (Tertiary Hypo) or the pituitary (Secondary Hypo) rather than the thyroid itself (Primary Hypo). The thyroid is not getting enough stimulus from the TSH to be able to make enough thyroid hormone.
And this is just one of the dangers of relying entirely on the TSH for diagnosis. It completely misses cases like this. And because they never see cases like this, due to only testing the TSH, doctors think that it's very rare! Well, anything can be considered rare if you never test for it! And therefore it's not taught in med school so the majority of GPs - and even endos - have never heard of it!
But you are very much hypo with those low Frees. And the difficulty is going to be in convincing your GP to refer you to an endo who can do further testing.
a private doctor has prescribed25mg levothyroine
But that’s T4 and do I also need T3?
Should I go private and see a specialist in Thyriod?
Your private doctor should get a medal for recognising you need thyroid hormone replacement! But he's being over-cautious and not prescribing enough. At your age, the normal starting dose is 50 mcg - 25 is much too low.
It's too soon to tell if you also need T3. You might be fine on just T4 because it converts to T3. But you would need to get your FT4 up a lot higher to be able to see how well you convert.
Real thyroid specialists are like hens teeth! I wouldn't know where to find one, myself. But if you know of a good one, by all means go and see him! It would be a very good thing to do. But, in the meantime, read up on Central Hypo and learn all you can about it because you're going to come face to face with a lot of ignorance on that subject! Good luck!
I just needed some reassurance and that’s what I needed. I think thyroid can cause anxiety and I can say I have had a few very anxious nights since my bloods came back, with relief maybe I have cracked it and I might get better and then the idea I have an under active thyroid.
I am very worried the nhs doctor is going to tell me I am fine as nhs guide lines ranges are even bigger now for TSH for it to be treated and they don’t test T3 I don’t think and I have never had T4 done only ever TSH which I am always with in range.
I normally get “your a woman your having periods that’s making you tired “
Oh you have two kids that must be why your tired
Now it’s Peri menopause that’s doctors day to be it’s like an umbrella to put so many symptoms and yes they do cross over and yes 45 I am prob peri menopausal
I have been offered anti depressants for my symptoms
I probably have had this for many years and it’s sad I have spent many younger years feeling tired going to bed early feeling like what’s wrong with me every time going to the gp being told I am fine.
I do have a private doctor and yes Levothyroxine given
Very cautiously given I might add
I am taking for one month then bloods again to see if it’s changing the levels and if symptoms get better or worse
Out of interest as I have been researching
I didn’t produce milk at all with both pregnancy’s Zero happened my breasts just stayed normal as they always are
My female hormones also have been all over the place for many years
Pretty sure the NHS doctor is going to tell you your 'fine' if all he's looking at is the TSH. But as I explained, he's probably never even heard of Central Hypo. And I don't suppose he fully understands what the TSH is nor how it works. If he did, he would see how illogical it is to rely uniquely on that and not the thyroid hormones themselves. Which is why you have to have enough knowledge to explain it all to him and answer any questions he might have.
You probably have had it for many years, yes. I became hypo around the age of 8 years old, according to symptoms (my hormone specialist (retired) backed me up on that). But I wasn't diagnosed until I was 55. And despite going to many, many doctors with my symptoms I was never even tested for thyroid, as far as I know. I was just dismissed as lazy, over-eating and a bit dim!
Even though I was hypo - suspected Hashi's, so levels must have varied - I did manage to have three children. Breast feeding was a nightmare, very painful for not much gain, and I could only keep it up for a month maximum before the milk ran out!
I know little about meningitis except that it's inflammation of the sheath that covers the brain. So, if that was inflamed it could have put undue pressure on the pituitary and caused disfunction. But I don't know anything about it for certain. I could be wrong. But it does seem likely.
I had dreadful labour which I had to have therapy in order to have second
Both babies were 3 weeks early
First baby was 6lb he was pulled out of me with a suction thing had third degree cut and I was very anemic after
Second baby 7.9lb still 20hours labour but no help I didn’t go into hospital till I was almost ready and gave birth within hour no time for anything I was home 7 hours later was much healthier this time
But both babies bottle fed no milk happened it never came in
So I have no idea if I lost a lot of blood had a lot of drugs epidural such along labour
How would I find that out might it be in medical notes?
Yes B12 and folate I will get just waiting for Gp to tell me what strengths and type to buy
GP will say these are “fine” as they are within range
But they need self supplementing to improve to optimal levels
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need 2 per day and/or may need separate methyl folate couple times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70
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
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.
It’s possible to have low ferritin but high iron
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
If taking any iron supplements stop 3-5 days before testing
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.
Post discussing just how long it can take to raise low ferritin
Wow thanks for all the information will have a good read
This all can about from a routine eye test in Jan and the optician saying I had curly veins and to get my blood pressure checked at doctors , which was low after a weeks blood pressure diary
So not highly blood pressure so my gp did some tests Bloods
And I had some Xmas money and decided to pay for a full health check private bloods
And this all came up in the private blood tests
so now going back next week to nhs doctors with all my bloods and still wondering if this is all linked to my curly eye veins 🫣🤯😂
But feel much more confident Levothyroxine is the right thing for me🤞🏻
A yellow or blue ring around the cornea may be a sign of high cholesterol, especially in a person younger than age 40. Deposits in the blood vessels of the retina can also indicate elevated cholesterol.
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
having one autoimmune disease makes others more likely
a private doctor has prescribed
25mg levothyroine
This is only half the standard STARTER dose
Which brand of levothyroxine have you started on
Bloods should be retested in 6-8 weeks
Retest early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Typically dose Levo is increased SLOWLY upwards in 25mcg steps until on full replacement dose
Guidelines of dose Levo by weight
approx how much do you weigh in kilo
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free, but contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you decide to normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Saw you eat porridge. I am rare but I had to give up oats as well as gluten. I did not show up in celiac blood test.It is good you are tolerating levo, a few don't. I have /had high TPO.
Forum seems to target T3 and T4 about 70% range, so you have a long way to go on dose. I started feeling much better when at 2/3rds dose and then it is optimising. All sorts of random symptoms and ailments slowly resolve.
Biotin vit b7 can interfere with bloods when at high dose. Stop say 3 to 7 days before thyroid bloods.
We are so lucky that kindly wise heros like SlowDragon and greygoose ,who were not well looked after share their knowledge they have to learn. It seems say 90% of cases are not so complex and I found forum a little scary at first.
I find forum careful and rigorous now, I am 2.5 years in.
I am a poor converter but you are say 6/12 months off knowing that. I am better with a little T3.
not started my meds yet so yes I prob have along way to go to get everything more balanced
But I have lots of help information guidance starting my journey from the lovely people here
I eat gluten free oats only once or twice a week to try and ease my constipation. I try and keep variety and balance as also trying to keep my weight stable.
I need to find a good endo for the future
I think saying poor converter or central hypothyroidism to my doctor is going to blow his mind 😂
Now booked ultra sound recommended by slowdragon
And off to get my first prescription of Levo today and will see what brand I can get
Thank you slowdragon and greygoose for your help 🤗
The levels move about during the day of T3 and T4, so you have to be careful comparing, It takes a few T3 tests to get good understanding. Wise ones say AI type takes many years to develop so likely you were starting.
Post on here where you are and people will direct message endo recommendations and TUK have a list. I have done mine DIY through forum.
Oats have a similar protein to gluten even if gf. I bought a dozen packs of danish seed crackers that were gf and they made me run to the loo. I used to love porridge too but had not risked it for a while before this. Slowdragon was better off dairy too. I think these are later optimisations after you get Thyroid levels up and optimise vits and mins.
Gluten and wheat stopping was not that bad been GF since June 2024 I can bake still and found a bakery which makes gf bread which is ok
Not sure I could do dairy, I love cheese, milk in my tea, I have gone lacto free skimmed milk for 6 months now but I am not a fan of plant based cheese or milk I can eat Alpro yogurt at a push
I have booked another blood test
Exact same place so same lab
Exact same time of day 8:15 morning so will be fasted
And also same point in my female cycle
Just to see for my own pice of mind maybe
Got ultrasound Monday
Picked up meds
Will wait before taking them to have bloods
Then all systems go to getting some energy and not feeling just a bit off all the time be nice to get rid of the itchiness my husband would say top of the list is libido but really just energy would be good
You seem to be picking it all up quickly and even allowing for the 28 day clock. Waking temperature under your tongue can be a useful guide to recover but needs correcting for the cycle.
I was gf a year before I found out about underactive. GF also takes time for your tum to recover and it can affect all sorts of things too.
I have a very understanding partner and she has helped massively getting through all this. Then this forum informs, helps me to understand, sense check things and what to look out for.
You will likely end up on 100 to 125 mg, I was desperate and pushed it quickly along on dose but I had no T4 level and TSH was I think 78, pushed dose along quickly not knowing any better but was OK for me. My heart is strong etc. See my bio. I remember my feet feeling warm again after a while and my core temperature coming back up. Doctors do not get good teaching on thyroids, my Mum is UAT and GF too and here treatment was very poor.
At start you can get swings in T3 and T4 levels if AI type, which you could still be, especially as needing to stay GF. Everyone is different.
I use MMH or Randox for home blood tests if you can manage to stab yourself ...
I don’t have much luck with getting the old blood out, I passed out last bloods as my veins are very wiggly and not prominent and i got fright flight and the blood flow stoped
The home tests never go well I end up stabbing every finger trying to fill one tiny tube 😂
So yes I will need luck with lots of blood checks going forwards 🤞🏻
just making sure you are aware ~for reliable TSH / fT4 FT3 tests , you need to be on same dose levo for at least 6 weeks ... if test before that ,levels have not have enough time to react / settle down again.
so as you've only just started taking levo , no point retesting TSh /fT4 /ft3 until been on levo 6 wks , or results won't tell you much with any certainty.
I am re testing my bloods before I start Levo just to make sure the first ones were not a fluke and to reassure me I am on the right track also go scan to make sure if thyroid health then if all tests done ect I will be starting levo in few weeks 😬🥰
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TSH implies over active, T4 under range, confused!!
Information required
Daughter thyroid results
Do I have an under active thyroid?
Fighting for a diagnosis, Thyroid disease or all in my head?
