I got diagnosed in March with under active thyroid and have been experiencing a wide range of symptoms including rapidly cognitive decline. I posted on here not king about about my b12 being low and also Vit D .
B12- 264ng (211ng-911ng) ( SEP)
403ng (211-911ng) Dec.
serum vit D is 59nmol ( 50-250nmol) (Dec )
I have been taking b12 spray since September as Dr wouldn't out me on injections! Hence why it's gone up. My vit D is still low though.
I have been suffering excessive gas,bloating floaty stools and still suffering with bad constipation , for the past 6 or months! I have read up more about Thyroid issues and apparently you can have Coeliac disease too?
I have mentioned this to my Dr this morning because this is why my b12 maybe low as it causes the malabsorption of vitamins. I have also stressed to her that the 50mg I am on is not enough for my symptoms and according to my records on patient access my levels are creeping up. Here is a list
12 March - *Diagnosed* 6.20 (0 .30-5.00nmol)
23 June - 1.99 (0.30-5.00nmol)
16 Sept - 2.95( 0.30 5.00 nmol) *proper jumped up especially experiencing the cognitive impairment and decline!)
8 Dec - 2.50 (0.49-5.23 nmol)
Serum T4 14pmnol/L (11-22pmol/L)
Dr has agreed to up my dosage to 75mg taking the 25mg on alternative days. This is only because I got upset 😔. I will be taking the 25mg on alternative days! She kept saying my levels were normal but I said they have crept up! She agreed to up it!
She has also requested a coeliac test , I requested an antibodies test on Dec 8 but other Dr gave me a menopausal test?? That came back fine! I was annoyed at the other Dr for this as I did not request this! I asked the Dr today for an antibodies test and she told me they are no use oe something! So I have booked the private one for £26 on here this morning to get full Thyroid health including T3!
Since my diagnosis I haven't had my T4 done or my T3!
I am happy my dosage has been upped ! And bloods again in 6 weeks to check if it's ok to carry on.
Sorry for Long post . I have been going insane these past few months and I need answers!
Thank you ☺️
Written by
animalfanatic85
To view profiles and participate in discussions please or .
Hi animalfanatic85,I would definitely take charge of your own testing. I feel empowered by doing this, as I can monitor my thyroid, antibodies and key vitamins. I don’t even bother asking for the medics advice/ suggestions on Medichecks, as I’ve had far better advice by posting my results on this forum.
Re coeliacs, I’ve never been tested for this, but feel so much better being gluten-free, as many symptoms I previously experienced have disappeared. Many of us with thyroid issues are gluten intolerant.
As your rather useless GP won’t test your antibodies, we can’t say for sure you have an autoimmune form of hypothyroidism, but since the vast majority thyroid disease is autoimmune, there’s a high chance yours is. And it’s not at all uncommon for autoimmune disorders to occur together. Meaning you may well be coeliac.
In any case, many of the folks who get their thyroid symptoms in check end up avoiding gluten. I know you’re supposed to leave it in your diet if you’re going to be tested for it and hopefully someone else here can advise on that as I just decided myself to try going strictly gluten free, before waiting to be tested. I can personally vouch for the improvements that made to me. FWIW, I went dairy free at the same time.
In any case, digestive issues are symptomatic of hypothyroidism and indeed an indicator that you are still undermedicated. We’ve no idea what your T3 is doing. But your T4 is only a quarter of the way through range and you ideally need to get it into the upper third of the range to feel well.
Like Buddy195 said, I’d advocate for taking charge of your own blood tests, eg via Medichecks, and taking more advice from here when you get them on how to ask for what you need from your doctor.
It can feel pretty daunting, and it can take time, but you can feel a lot better!
Bloods should be retested 6-8 weeks after EACH dose increase
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels and INSIST on thyroid antibodies tested
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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 slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
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.
Thank you sooo much for this information! My Dr will hate me calling up again tomorrow pushing for more tests 😬. I do agree with the Vitamin D as it's only 59nmol! I will get the spray as I have the B12 one and it is working. I was vitamin D deficient back in 2018 after two weeks in Arizona!? Didn't get it! It was 47nmol back then and Dr put me on a very high dosage. And I stopped after taking them.Think looking back at my medical history on patient access app, I have been borderline under active for years!
Serum TSH levels over the years ...
15 Jul 09- 5.33 ( 0.20-6.00 Miu/L)
21 Jul 10 - 4.3 ( 0.20-6.00 Miu/L)
5 Jul 12 -. 3.4 ( 0.20-6.00 Miu/L)
14 May 14 - 3.23 (0.20-6.00 Miu/L)
1 Apr 16 -. 3.67 ( 0.30 -5.00 Miu/L)
14 Jun 19 -. 3.64. ( 0.30- 5.00 Miu/L)
And SEP 18 when vitamin D was diagnosed as low my thyroid was high
4.12 ( 0.30-5.00)
I think I may just pay the £79 for the test this once and then explain to my Dr and push for her to do it next time! As I can't afford this amount every 6-8 weeks 😔.
I have jotted down all this information!
I have also placed an order for the £26.10 test.
I will wait for my results for Coeliac and will start gluten free even if negative!
Looking at my above results do you think I may have had this for the last 10 years? I have been the drs for numerous things over the years including tiredness and bowl problems! Shocking looking at my own medical records and getting myself clued up now!
Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.
The thyroid hormone status would play a role in the maintenance of vitamin D sufficiency, and its immunomodulatory role would influence the presence of autoimmune thyroid disease. The positive correlation between free T4 and vitamin D concentrations suggests that adequate levothyroxine replacement in HT would be an essential factor in maintaining vitamin D at sufficient levels.
“According to the current TSH reference interval, hypothyroidism was not diagnosed in about 50% of the cases in the afternoon.”
“Further analysis demonstrated inadequate compensation of hypothyroidism, which was defined in 45.5% of the morning samples and in 9% of the afternoon samples”
TSH levels showed a statistically significant decline postprandially in comparison to fasting values. This may have clinical implications in the diagnosis and management of hypothyroidism, especially SCH.
Thanks for the above information! This has definitely been a wake up call and realisation for me! Can't believe I have been going through some of these symptoms for years and drs never looked at my results! Shocking!
Yes she has gave me one box of 25mg of workhardt and my normal Levo 50mg I flick between two brands Teva and another brand in a brown and white box. (Don't know the name of them) . Depends on what pharmacy have in. Can that make a difference?
Yeah she did say she would test my bloods in 6 weeks time.
I am thinking the same! Since my levels have creeped up. What's the optimum level to feel better? Last level was 2.50 on 15th December.
Thank you for all this information!! I think I will also ask to be referred to an endocrinologist!!
Sent an enquiry to the spire in Manchester last too see how much it is privately.
Typically costs £200-£250 for initial consultation....cheaper as follow up
Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private
tukadmin@thyroiduk.org
(Office not open until after New Year)
The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of how low TSH is)
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
No point seeing consultant until had next dose increase and got ALL FOUR vitamins OPTIMAL
Plus trialing strictly gluten free diet
First step is to get vitamin levels tested
Get FULL thyroid testing 6-8 weeks after dose increase
Many people find Levothyroxine brands are not interchangeable.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
Teva, Aristo and Glenmark are the only lactose free tablets
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Note Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but beware 25mcg Northstar is Teva
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 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
Unless very petite you are likely to need further increase in levothyroxine in coming year
guidelines on dose levothyroxine by weight
Even if we 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 on, or near full replacement dose
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.
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.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
I am currently my heaviest at 10st 10lbs my weight has pilled on over the years! I am around 5'7 in height too. Again I will take note and push my Drs!
Thank you sooo much! You've been a great help! I am so thankful I have found this forum/group!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Do I have an under active thyroid?
After advice under active thyroid or menopause?
Do I have under active thyroid
Hi i’m new to the forum but have had under active thyroid for 20yrs
under active thyroid diagnosis 
