re.hypothyroidism. would love to receive name/names of thyroid specialists by personal message. In Scotland if possible. If know costs and locations where can be seen would appreciate the information. Looks as if need to be prescribed tirosint because genetic enzyme deficiency to mannose(mannitol derived from this), and lactose. Don't know yet if levothyroxine will benefit me or not. TSH was 4.02, T4 5.5 and T3 6.5. Started Tevo levothyroxine at 25 mcg dose 8/3/22, and discovered last week has mannitol and other tablets have lactose. No improvement of symptoms as yet. Chronic fatique diagnosis since 1987. Have asked doctor to approve tirosint but may not be successful. Had thyroid checked 11/4/22 and TSH 2.08. since taking levothyroxine. Lab processed TSH only. March 2020 TSH was1.87, T4 10.6 in range of 12-22. June 2020 TSH 2.75 and lab wouldn't process T4. Shouted at June 2020 and told thyroid fine and don't ask for it to be checked again.Because have asked for tirosint and can't be prescribed without permission have been told to stop TEVO. Think to ask for a liquid lactose and mannitol free levothyroxine would need to be prescribed initially by an endocrinologist which could take a year or more under nhs. Have 2cm flare left lobe of thyroid and have been waiting since September 2021 for thyroid ultrasound scan for this. Know all or part of this dates from June 2021 rather than purely old nodule as aware of fullness in neck since then. Privately, Roseway liquid levothyroxine looks best option but strength is per ml. of T4 which lab did not process11/4/22. Don't want to go private but may have no option because NHS causing so many obstacles to treatment. Hoping doctor might have done an IPTR (individual patient treatment request) but even if successful would be off medication for at least 6 weeks. Help!
tirosint and scottish thyroid specialist - Thyroid UK
tirosint and scottish thyroid specialist
Aristo levothyroxine tablets are lactose free and mannitol free
They are only available as 100mcg tablets…..but you could cut in half to get 50mcg …the standard starter dose levothyroxine
Request new prescription and GP to add note Aristo brand only
How much levothyroxine are you currently taking
ESSENTIAL to test vitamin D, folate, ferritin and B12
When were these last tested
What vitamin supplements are you currently taking
Have you had thyroid antibodies tested yet for autoimmune thyroid disease
Thank you for your reply and advice. Levothyroxine dose given and started (8/3/22) was 25mcg and doctor was going to keep dose at 25mcg. when I spoke to her 22/4/22, as lab only tested TSH from bloods done 11/4/22, when TSH came back as 2.08 after taking 25mcg tevo since 8/3/22. ( I am 64 years old) Spoke to Ukrainian locum who may have better grasp of thyroid problems than UK trained? Said she needs T4 which she will ask lab to do 12/5/22 as lab won't retest within 28days of a test being done. Test done 24/2/22 was when TSH 4.02, T4 5.5 and T3 6.5. Aristo no good as has maize starch which I avoid and 100mcg tablets, rather than 25mcg. I would need to quarter them. Calcium and Vitamin d were checked 24/2/22 as well as thyroid TSH,T4 and T3 but don't think anything else.
When test done 24/2/22, I was looking for a trigger for a tooth root shattering and research pointed me to an underactive thyroid as a possible culprit, as you can have periodontal problems through this.I asked for my thyroid to be checked because dentist flabbergasted that a tooth root had totally shattered and fragment had worked its way up above gum line and he had mistaken it for a loose filling!. He has never seen anything like it in his life. I believe this the result of using aloe vera sun milk, containing mannose ,on face and neck and going out into sun at end of June 2021 when visitor arrived when covid advice to meet outdoors .Felt awful. Normally a sun worshiper, but was sun averse at this time. Normally cold all the time , but body temperature was way up and couldn't cool down. Next morning neck was covered in mega itchy, big red lumps. Had them for about 6 weeks and spread down to clavicles. Lost part of left eyebrow and below eyes very puffy. Red flags for underactive thyroid but didn't realise at the time.
I believe I must have had an auto immune response where my thyroid tagged the mannose applied to my face and neck as an attacker, and for good measure, shattered a perfectly healthy tooth root on lower left of my mouth. I believe this has at least partially, if not wholly caused the 2cm flare on the left lobe of my thyroid.
I have a very rare genetic VUS ( variant of unknown significance) for an enzyme deficiency to mannose. I have also a genetic, mildly reduced enzyme deficiency for galactose, which is glucose and lactose, also rare.
All the tests which should be done when testing thyroid which you mention, including antibodies were done in March 2020. I was told to get T4 retested 3 months later in June 2020 because T4 was 10.6 in a range of 12-22. TSH was 1.84. In June 2020 TSH was 2.75, but nothing else was processed. Further blood was sent June 2020 for T4, but nothing processed as within a month of a test being carried out. I got shouted at by doctor and told not to ask again , when I had been instructed previously to do so by a different doctor, and that there was nothing wrong with my thyroid as my TSH fine and that that is what matters.
The only reason she agreed to a retest of my thyroid 24/2/22 was because of the highly unusual shattering of the tooth root and the red flags for underactive thyroid June 2021.She admits to having no knowledge where teeth are concerned. It seems to her to be unreasonable to ask for a thyroid test when it was tested twice in 2020 and once in 2004 and 2014. This is not the Ukranium locum I am talking about.
The only vitamin that has been problematic is vitamin B12. I was very ill in 2013 and asked for B12 to be checked then as I believe there has been a genetic problem on both sides of my family history with this. I was correct I had a deficiency.
I should add that I am currently being investigated for Ehlers Danlos Syndrome, a hypermobility disorder where collagen is defective, and where periodontal problems and underactive thyroid are common.
In the last year or two I have supplemented with high dose sublingual combination methylcobalamin, adenosylcobalamin and hydroxocobalamin and would expect my levels to be up at c.1000. If I don't take high dose B12 I lose feeling in the soles of my feet. My doctor is useless where b12 is concerned and is worried about my mental health when I say I have a need to supplement with B12! Doctors seem to know nothing about b12 or thyroid problems!
The genetic mildly reduced enzyme activity for glucose and lactose affects a brain enzyme called GALC which is connected to the myelin sheath around nerves and the white matter in the brain, as is the case with multiple sclerosis. In my case another rare disease, the gene for which was only cloned in the 1990s is implicated . A brain M.R.I. scan done at end of August 2021 did show non specific vascular disease of the white matter in my brain, as I expected. Unfortunately, since I was 63 years old by the time they did the test, it has been labelled as age related. Had they done the scan 30 years ago it would have been there then.
It was only by accident that I noticed the mannitol content in the medication, weeks after I started taking it, and was horrified. When I had telephoned the surgery for my blood results I was told my thyroid was normal, no action required. I don't have a repeat prescription.
I do have big gut issues. I lost bowel control in 1995 and have bowel urgency and incontinence and food intolerances. My sister has had the same problems intermittently since she was 30 years old, and one of her daughters has intermittent urgency, but she gets to the toilet in time, whereas my sister and I do not. I blame the VUS previously mentioned for this.
I have a big problem with carrageenan and don't eat processed food because of this and other identified food intolerances. Rye and millet are awful, and were only consumed when doing an NHS supervised elimination diet between 1995 and 1997.
A private York Intolerance Test in August 2017 identified egg white, yeast, salmon/trout, egg yolk, brazil nuts, buckwheat and cow's milk as intolerances.
I eliminated these from my diet and lost 2 stone in weight, gradually 2 lbs. at a time. I swapped supermarket meat and chicken for butcher's grass-fed, making sure no carrageenan. I lost a further 1stone and 2lbs. gradually, 2lbs at a time. This returned me to the weight I was prior to becoming ill in 1987, and I can maintain this weight loss.
I do not have a problem with wheat or gluten per the intolerance test, and a coeliac test done years ago was clear. I don't eat much wheat or gluten.
Apart from the B12 supplement which I consider I need, I take a lot of supplements. None of my vitamins tested by my doctor have been deficient apart from B12.
Since 2018 I have a level teaspoon of spirulina, chlorella ,ashwaganda, hemp protein, baobab and macqui berry powder daily. Also 2 teaspoons of chia seeds. I take 100mg advance ubiquinol kaneka qh co enzyme q10 for gum health, 25ug Vitamin D3, 2,000mg black garlic and for eye health, Retinex Max (Zeaxanthin2,000uq+Lutein20mg+VitB2, 1.4mg).
I have a problem in that I cannot get more than a drop of blood to flow for a finger prick test if have to provide more than a drop of blood, even following all tips to make blood flow!
Had the tooth root not shattered I don't think my doctor would have agreed to a thyroid test, and I think she just humoured me, not for one minute expecting that it would show a result of hypothyroidism, which it did. When I mentioned T4 she said that we just have to hope that the lab will do it, although she attaches no importance to T4. She thinks TSH is all that matters! The Ukrainian locum who reviewed my results believes T4 and T3 very important.
My last 2 tests were done at 12.10p.m. as this is the latest blood draw they offer, and it is a problem for me to leave the house before 2p.m. because my bowel does not calm down until then. Also, I am useless in the morning and just don't function well. So testing has been done after breakfast and supplements taken, and 25mcg levo for the TSH test which was 2.08, I'm afraid.
Can you draw any conclusions from T3 being 6.5 and T4 being 5.5? I realise T4 is an inactive reservoir which active T3 draws from when needed, but got the impression that T4 should be higher than T3? Is it a good sign that T3 at 6.5 is near the top of the range (6.8)?
Any help greatly appreciated.
Just realised this is your first post on forum….welcome
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis) usually diagnosed by high 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.
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests early morning, ideally before 9am 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 by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies 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...
NHS easy postal kit vitamin D test £29 via
About 90% of all primary hypothyroidism in Uk is due to autoimmune thyroid disease . Gluten intolerance is often a hidden issue too. Request coeliac blood test BEFORE considering trial on strictly gluten free diet
You don’t need any obvious gut issues to still be gluten intolerant. The fact you’re intolerant on lactose suggests gut issues likely
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
List of hypothyroid symptoms
thyroiduk.org/if-you-are-un...
Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors - there are a few in Scotland
tukadmin@thyroiduk.org
Test done 24/2/22 was when
TSH 4.02,
T4 5.5
T3 6.5
Please add ranges on these results
25mcg is only half the standard starter dose
Admittedly, as nearly 65 a GP might start you on 25mcg but dose levothyroxine is increased slowly upwards (usually in 25mcg steps, sometimes slower at 12.5mcg increase) until TSH is around 1 and Ft4 and ft3 at least 50-60% through range
Typically that dose levothyroxine is approx 1.6mcg per kilo of your weight per day. So unless very petite at least around 100mcg per day. It typically takes around a year to increase dose levothyroxine slowly upwards
What was vitamin D result
Have you had folate or ferritin tested
Raised red skin sounds like hives (urticaria) extremely common with autoimmune thyroid disease (hashimoto’s)
Elhers Danlos and Hashimoto’s often go together
Quite a few members on here have both and many of them find strictly gluten free diet helps
Medichecks or Blue horizon can provide a nurse to do blood test at home for 9am
Many thanks for your reply. pretty sure the range will be :TSH 0.27-4.2 and I was 4.02, but 2yrs ago 1.84, then 2.75
FT4 definately 12-22 and I was 5.5, when 10.6 March 2020
FT3 3.1-6.8 and I was 6.5
Based on body weight of 10 stones (140lbs), levothyroxine dose should be 100 mcg per day.
I am 5 feet and 8 and a half inches tall.
A few years back blood pressure was high. Top reading of 211 at an eye hospital appointment, when had just had a 24 hour blood pressure monitor a few weeks previously.. I was never put on blood pressure medication as blood pressure comes down when asleep, so deemed situationally high rather than functionally high. They look at the 24 hour average reading which was deemed fine in the 130s range. This probably indicates I will be having ongoing problems with cortisol and adrenals. Constantly getting no help and hitting your head off a brick wall at every turn when it comes to the medical profession alone could do this, as well as all the additional stresses of everyday life.
Vitamin d was okay but no idea what it was.
Folate and ferritin were checked March 2020 and deemed okay, but no idea what they were.
I feel that if I start at this stage asking for printed past results I will antagonise the surgery and doctors.
Gluten free food usually made with buckwheat which I have a very, very bad food intolerance to.
Not eating processed food and catering to the food intolerances I have would make it very difficult to go completely gluten free.
Telephoned hospital today re. waiting list for ultrasound thyroid scan and clear i need to go private for this to find out if I have a cancer, inflammation or what.
Doctor says she needs to know what the 2cm flare on my thyroid is and I agree.
My results seem to be saying that my pituitary has been increasing its request via TSH to make more T4 thyroxine which is reducing rather than increasing, yet my active T3 is 6.5, which is almost at the top of the range. I don't understand this?
I agree high Ft3 and extremely low Ft4 is very odd
Are you currently taking any vitamin supplements that contain biotin. Biotin can falsely affect test results
If not…..
GP should arrange retest using different lab to process new blood test
We have had odd results from various members
You can get interference in testing
Believe it or not …..mouse antibodies 🐁🐭
logicalbiological.com/hama-...
Or rabbit 🐇🐰
ncbi.nlm.nih.gov/pmc/articl...
Ultrasound scan £100 privately
Roughly where in U.K. are you
Wow, mouse antibodies! Even March 2020 TSH 1.84 and T4 10.6 a bit odd. I am in Hamilton, South Lanarkshire, Scotland. Ultrasound sites minutes away, but don't do thyroid. Only one I can find is in Newton Mearns, Glasgow, £100, but it's Thursdays and Fridays 6a.m. -8a.m. appointments! I can't normally leave home before 2p.m., plus I would need to get someone to take me. A place in Glasgow city centre advertises them for £95 but stopped doing thyroid scans sometime ago and haven't changed their website.Spirulina, chlorella, and baobab powder contain biotin. I take a level teaspoon of each per day. Not mentioned for hemp protein or , ashwaganda powder but might be there!
So you need to stop any supplements that might contain biotin a week before all blood tests
Did you find These options
circlehealthgroup.co.uk/hos...
medicalultrasound.co.uk/ind...
Circlehealthgroup only offers thyroid surgery at Rosshall by the looks of it.Medicalultrasound is the £95 option in city centre who no longer offer it but haven't updated their website.
Is it still okay to take biotin as long as not within a week of a blood test?
Would you agree then that my blood test results don't really make sense unless being skewed by biotin?
The galactose enzyme deficiency for Galc is one where if my blood was tested would get a false result.I have a pair of pseudodeficiency allelles for this. So glucose and lactose. Could this have something to do with it. The disease that the pair of allelles are for is Krabbe/ Globoid Cell leukodystrophy, a lysosomal storage disorder.The other disease I have a VUS for is also a leukodystrophy/lysosomal storage disorder for mannose.
I eat a lot of nuts daily which are good sources of biotin. Daily I have cashew , almond, peanuts, walnuts, almonds and hazelnuts. Some days pecans, sunflower and pumpkin seeds. Diet seems quite rich in biotin. Walnuts and peanuts I think particularly high.
The point is biotin needs to be avoided in the week before blood test because many labs use biotin in their processing and if you are taking biotin supplements this can give odd/false test results
many thanks
You need to see an endocrinologist if want to get liquid levothyroxine trial as it’s expensive, GP won’t initiate
Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors
tukadmin@thyroiduk.org
Levothyroxine doesn’t top up failing thyroid, it replaces it
Starting levothyroxine - flow chart
researchgate.net/figure/Flo...
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/files/docs/...
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
See also at approx 16 mins into this YouTube clear info of dose levothyroxine
Managed to get private thyroid ultrasound done. He said at appointment that there are 2 adenomas there. One 2cm and the other 1.2 cm. Both on left lobe of thyroid, and both look benign. In August 2021, my mri brain scan had showed a 2cm in diameter flare on left lobe.Looked up adenoma and says this is a tumour and different from a nodule.
Now have his report which says I have two U2 benign nodules!
Do sonographers report adenomas as nodules to allow them to use the U1-U5 classification system? Any knowledge on this?
Full report reads as follows:
Right lobe of thyroid gland appears normal in size and echotexture.
Left lobe of thyroid gland measures 20x26x46mm, shows two well defined predominantly solid nodules with cystic components, measuring 20x13x25mm and 8x8x12mm. No evidence of increased vascularity or calcification. Sonographic appearance is suggestive of U2 nodules.
Isthmus appears normal. Submandibular glands appear normal bilaterally.
No evidence of lymphadenopathy.
IMPRESSION: Left lobe of thyroid gland shows two U2 nodules, measuring 20x13x25mm and 8x8x12mm. End of report.
Since the 12mm bit of the 8x8x12mm smaller nodule seems to be the 1.2 cm in diameter adenoma he mentioned, is the other one now a 2.5cm in diameter nodule , rather than 2cm do you think?
Don't know if this is something you have experience or knowledge of or not?
Not tech savvy at all, so suspect I may be asking solely you, Slow Dragon, rather than throwing the question out to the forum in general? Not good at all with computers!
With a previous test result of tsh 4.02, t4 5.5, and t3 of 6.5 from what I have picked up so far, it seems as though the nodules are controlling my thyroid rather than my pituitary and hypothalamus? If so, are any further tsh values from future blood tests then largely irrelevant? Do you only get a tsh value if the pituitary and hypothalamus are working to some extent. Think last blood test, tsh was 2.08.
Since no problems mentioned on brain scan re. pituitary and hypothalamus does this rule out a problem with them?
Are nodules appearing as the body's way of compensating for an underfunctioning pituitary and hypothalamus?
Any words of wisdom welcome!
I don’t know anything about hot nodules…sorry
PurpleNails may be able to help
I would write a new post asking the forum in general
tsh 4.02,
t4 5.5,
t3 of 6.5
You need to add ranges on these results…..Ft4 looks low….but without ranges impossible to say
Adenoma are abnormal growth but function as additional tissue, usually over function. As nodules function regardless of the TSH level & they effectively “take over” the function of thyroid, but this is usually because the excess FT4 & FT3 Causes the TSH to drop (and suppress thyroid). Your TSH is high.
Nodules are referred to as toxic - hot or autonomously hyper functioning nodules, adenomas is a less used term.
Function throughout the thyroid can’t be determined (not conclusive) by ultrasound so unless further tests have been done I’m not sure it can be a certainty they are over producing.
U2 means abnormal but not additional features of concern.
It is usually with nodules that the TSH drops first, then FT3 rises & FT4 follows behind & this can take years. Add in your existing under active levels & health issues it might possibly explain your usual results.
Are both results Free T4 & Free T3 as Total T4 & T3 will not give you the information you need.
Can I also clarify, you currently take levo (only). It’s unusual to have such a high FT3 and low FT4.
Was only given 25mcg Northstar Levo with mannitol 8/3/22 because of results tsh4.02 (0.27-4.2), t4 5.5 (12-22) and t3 6.5(3.1-6.8). Slow Dragon suggesting I write a new post asking forum in general. Don't know how to do this. Wrote giving extensive detail 9 and 10 days ago but think post may have gone exclusively to Slow Dragon. Lots of info. given 9 and 10 days ago.
Test was done without all the protocols suggested on site and do supplement with biotin when use a teaspoon of spirulina, chlorella and baobab powder daily.
This original post with all your detail is visible to forum, it was just the recent reply which notified Slow dragon. All members can see but might not get attention as not a new post.
You can start new post by either using using blue “write” button - Top right. Or there is a “what’s your question” at top of posts
So as first step you could try again with different 25mcg brand levothyroxine
Either Wockhardt or Mercury Pharma brand are usually easily tolerated
Wockhardt only make 25mcg tablets
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets, so if you do well on Mercury Pharma it’s easy
Always stop taking any supplements that contain biotin a week before all blood tests
Always test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test
Retest 6-8 weeks or longer after each dose increase
SlowDragon,
Wua13262348 cannot tolerate lactose or mannitol!
So Wockhardt and Mercury Pharma would not be acceptable.
Glenmark is available in 25 micrograms and is free of both lactose and mannitol.
Glenmark also to 25, 50 and 100 microgram tablets.
And Aristo ….but 100mcg only
Thank you Helvella and Slow dragon. Noticed the Glenmark one yesterday when someone posted about being prescribed it and thought looked interesting, and if can't get tirosint would seem only option, but don't know if would tolerate.Aristo would be unsuitable as maize starch/ or maltitol and I have an IBS diagnosis and this worsens IBS as draws water into digestive tract by osmosis, causing diarrhoea.
Don't know if I thanked PurpleNails. Much appreciated.
can you share the name of the gene that shows genetic enzyme for mannose? i want to check my dna results for it i did not know about it but am struggling i am certain with the aftereffects of mannitol that was in euthyrox and later in an atp supplement i was taking it was horrific and i remain out of high normal range at 5.5 tsh when i had been doing great on levo without mannitol and my tsh was at 1.2 thank you for any response
The enzyme deficiency for mannose is a mutation of the MAN2B1 gene, associated with the leukodystrophy/ lysosomal storage disorder, alpha mannosidosis, which is autosomal recessive. You need a mutation from each parent to have the actual disease. Supposedly shouldn't be affected by it if mutation only from one parent.Good luck.
thank you!
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