Im really frustrated. I feel like im going in circles. For a long time now ive had months of feeling unwell with insomnia, frequent bowel movements, anxiety and nervousness with no triggers, swelling in my neck.
I had a blood test last year and all apparently normal, im going to ask for these levels when i get called back.
I got really unwell im March and have only just got through that. My bloods in may were;
Vit d 28, range 50-120
Ft4 14, range 9-20
Ft3 5.6, range 2.4-4.9
Tsh 1.91, range 0.35-4.94
My bloods were redone a week ago and have been told they are normal, no action but ive asked for the actual reads as im still having symptoms. Ive started taking d3 supplements since may so the fatigue isnt so bad in between the spouts of insomnia. Im struggling to work in my office at the moment and stuck working remotely because of heat intolerance. When i get too hot it triggers every other symptom.
I had an ultrasound on Monday but my neck was not as swollen as it has been, for the first time in maybe 6months.
I dont know what to do, because im struggling to control my symptoms and are getting little to no help from the GP.
My mum has an underactive thyroid and apparently there have been other thyroid issues in the family.
I know my body but dont know what to do or say to get help.
I was checked for other things like IBS, IBD etc. and all have come back fine.
Any help would be appreciated.
Laura
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Lawzef90
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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 B12, folate and ferritin levels. Plus thyroid antibodies
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 .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
So they have advised i take 1000riu vit d supplements but no retest on this.
My b12 was 345, range 187-883 but i have been b12 32 before and was given injections for 3 months a couple years back. Ive taken b12 supplements since.
My TPO was checked and told in range but no numbers provided.
So they have advised i take 1000riu vit d supplements but no retest on this.
That really is quite pitiful. 1000iu D3 is just about a maintenance dose for someone with a decent level already.
With your level of 28nmol/L you are only just above the deficiency level (<25 = deficiency) and not that long ago deficiency was diagnosed when level was <30.
In your position I would be treating myself with the doses recommended for deficiency by NICE Clinical Knowledge Summary:
"Treat for vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 25 nmol/L.
For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU]) given either as weekly or daily split doses, followed by lifelong maintenance treatment of about 800 IU a day. Higher doses of up to 2000 IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders.
* Several treatment regimens are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."
I would retest (privately, as GP wont retest) when loading doses are finished. Then come back here with new level for guidance on what dose to continue with.
The Vit D Council recommends a level of 125nmol/L and the Vit D Society recommends a level of 100-150nmol/L and I would take that recommendation over the NHS recommendation any day.
Once you've reached the recommended level then you'll need a maintenance dose to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3 as recommended by the Vit D Council.
D3 aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.
Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking magnesium as tablets/capsules, no necessity if using topical forms of magnesium.
Don't start all supplements at once. Start with one, give it a week or two and if no adverse reaction then add the next one. Again, wait a week or two and if no adverse reaction add the next one. Continue like this. If you do have any adverse reaction then you will know what caused it.
My mum has an underactive thyroid and apparently there have been other thyroid issues in the family.
I know my body but dont know what to do or say to get help.
I was checked for other things like IBS, IBD etc. and all have come back fine.
Insist that GP tests thyroid antibodies
Gut symptoms are EXTREMELY common with autoimmune thyroid disease (Hashimoto’s)
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist 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
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
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 for all your replies so far. I will post my ranges and levels once they are provided to me.
In regards to all the links, thank you so much! I will take a look.
Ive noticed taking the 1000riu i feel a little bit better but will read the guidance and look to increase.
@scrumbler - I have had the worse flutters recently and they come in spouts. My insomnia this week is awful. Not falling asleep until 4.30am and back up 7-8am and not able to sleep again.
Im hoping to have my results for other bloods today so I will update at this point.
Im glad that this forum exists as its making me feel like its not all in my head.
It's not all in your head, just try and get comfortable and relax. I know it's not an easy ask when unwell and having horrible symptoms.
Just picking up on the over range T3 this can give you all the symptoms you have described and since it's now back in range, like a jack in the box, your body will start to calm down.
It sounds as though your thyroid went a bit hay wire, possibly because of an attack by your immune system, which should be evident when you get the thyroid antibody blood test back.
What is your resting pulse rate? I suggest you keep a daily record. It could by thyroiditis with erratic secretion of T3. This may or may not be associated with antibodies. Put your latest blood test results on here when you have them.
Hey jimh111 - my resting bpm varies from day to day. Usually 85bpm, but it has been known to go up to 115bpm when im just sitting down. I get quite out of breath now doing simple things, which i havent before. Like walking up stairs. I used to do a lot of cycling and struggle with this at the same pace now.
I thought I would provide my updates on my private bloods, it looks like theyre normalising a bit now but still several symptoms present, particularly digestive and anxiety/irritability.
I have been on vitamin supplements for two months now and my results are as follows;
Tsh - 1.66 (0.2-4.2)
Ft3 - 5.18 (3.1-6.8)
Ft4 - 17.1 (12-20)
Tgab - 13 (<100)
Tpoab - <9 (<34)
TSH, Tpoab and Ft3 have lowered, Ft4 has increased slightly.
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Please. I dont know what to do.Help?
What do you know about your Thyroid?
So fed up, don't know what to do.
HELP!!! DON'T KNOW WHAT TO DO NOW!! NEW TO T3!
