........What next?
Raised TSH levels were picked up on during a blood test after months of symptoms. I am having more blood tests in 6 weeks to recheck these levels but decided to purchase a private blood test to check my antibodies. What shall I say to my GP?
sunshineisbetter
What shall I say to my GP?
That raised antibodies confirm autoimmune thyroid disease (known to patients as Hashimoto's) and that when TSH is over range (but not reached 10) along with raised antibodies then Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors) in answer to Question 2:
Question 2 asks:
I often see patients who have an elevated TSH but normal T4. How should I be managing them?
Answer:
The combination of a normal serum T4 and raised serum TSH is known as subclinical hypothyroidism. If measured, serum T3 will also be normal. Repeat thyroid function tests in 2 or 3 months in case the abnormality represents a resolving thyroiditis.
But if it persists then antibodies to thyroid peroxidase should be measured. If these are positive - indicative of underlying autoimmune thyroid disease - the patient should be considered to have the mildest form of hypothyroidism.
In the absence of symptoms, some would simply recommend annual thyroid function tests until serum TSH is over 10mU/l or symptoms such as tiredness and weight gain develop. But a more pragmatic approach is to recognise that the thyroid failure is likely to become worse and try to nip things in the bud rather than risk loss to follow up.
Treatment should be started with levothyroxine in a dose sufficient to restored serum TSH to the lower part of it's reference range. Levothyroxine in a dose of 75-100mcg daily will usually be enough.
You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 2 to show your doctor and ask for a prescription for Levothyroxine.
Thank you so much for your help.
Are those thyroid antibody levels particularly high or typical of potential Hashimoto’s?
Could you explain the ranges to me at all?
Hashi's is a bit odd. Your antibody levels will go up and down as they see fit - if your next test shows them as lower, it doesn't mean you are "getting better"; it just means they have gone down a bit (and will then go up later on).
It can't be "cured" but it's nothing really to worry about. It's surprisingly common - around 90% of hypothyroidism is due to Hashi's. A lot of people find it helpful to go gluten-free (and/or dairy-free) - so may be worth a trial.
greygoose does an excellent summary of Hashi's - so have tagged her x
OK, so Hashi's is an autoimmune disease, where the immune system attacks and slowly destroys the thyroid. It is diagnosed by testing Thyroid Peroxidase (TPO) antibodies and Thyroglobulin (Tg) antibodies.
Contrary to popular belief, it is not the TPO/Tg antibodies themselves that attack the thyroid:
"When lymphocytes infiltrate the thyroid gland, mistakenly taking it for a foreign bacteria invader, they damage the thyroid gland and release thyroid peroxidase &/or thyroglobulin into the blood stream. These don't belong outside of the thyroid gland so antibodies are developed to mop them up.
The antibodies are a result of the attack on the thyroid gland, the antibodies don't cause the attack."
thyroiduk.org.uk/tuk/about_...
After every immune system attack on the thyroid, the dying cells release their stock of thyroid hormone into the blood stream, causing the levels of the Frees to shoot up - FT4 to around 30 something, FT3 around 11/12 - and the TSH therefore drops to suppressed.
There is no knowing how long these high levels will persist, but eventually, they will drop by themselves as the excess hormone is used up or excreted, and not only will you become hypo again, but slightly more hypo than before, because there is now less thyroid to make hormone.
(NB: A Hashi's 'hyper' swing is not true hyperthyroidism in that your thyroid is over-producing thyroid hormone. It's physically impossible to 'go hyper' if you are basically hypo. The thyroid cannot regenerate itself to the point of over production of hormones - or even normal production. Very few doctors appear to know that.)
Therefore, it's very important that your doctor does not reduce your prescription, because you’re going to need it again! If you start to feel over-medicated at that point - some do, some don't - the best thing is to stop levo for a few days, then, when you feel hypo again, start taking it again. It's very important to know one's body, and how it reacts.
There is no cure for Hashi's - which is probably one of the reasons that doctors ignore it - apart from the fact that they know nothing about it, of course!
However, between the 'hyper' swing, and the descent back into hypothyroidism, there can be a phase - quite a long one, sometimes - of normality, where the person is neither hypo nor 'hyper'. This is where people sometimes start talking of having 'cured' their Hashi's, by whatever means. But, it doesn't last. Eventually, you will go hypo again.
But, there are things the patient can try for him/herself to help them feel a bit better:
a) adopt a 100% gluten-free diet. Hashi's people are often sensitive to gluten, even if they don't have Coeliac disease, so stopping it can make them feel much better. Worth a try. Some say that going gluten-free will reduce antibodies – I’ve never seen conclusive proof of that, but, you should be aware that even if you were to get rid of the antibodies completely, you would still have Hashi's, because the antibodies are not the disease. It is not the TPO/Tg antibodies that do the attacking.
b) take selenium. This is not only reputed to reduce antibodies, but can also help with conversion of T4 to T3 - something that Hashi's people often find difficult.
c) the best way to even out the swings from hypo to 'hyper' (often called Hashi's Flares, but that doesn't really sum up the way it works) is to keep the TSH suppressed. This is difficult because doctors are terrified of a suppressed TSH, for various false reasons, and because they don't understand the workings of Hashi's. But, TSH - Thyroid Stimulating Hormone (a pituitary hormone) - tries to stimulate the thyroid to make more hormone, which also stimulates the immune system to attack. So, the less gland activity there is, the less immune system activity there will be, meaning less attacks, gland destruction slowed down and less swinging from hypo to hyper and back.
Hope this helps. 
sunshineisbetter
They are high.
Thyroid Peroxidase - a level between 0 and 34 is negative, over 34 is positive.
Thyroglobulin - a level between 0 and 115 is negative, over 115 is positive.
It doesn't really matter what the result is when positive, antibody levels fluctuate and if you tested again they could be higher or they could be lower.
Some information about Hashi's:
Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.
Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.
You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Gluten/thyroid connection: chriskresser.com/the-gluten...
stopthethyroidmadness.com/h...
stopthethyroidmadness.com/h...
hypothyroidmom.com/hashimot...
thyroiduk.org.uk/tuk/about_...
Supplementing with selenium l-selenomethionine 200mcg daily is said to help reduce the antibodies, as can keeping TSH suppressed.
Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. It's essential to test Vit D, B12, Folate and Ferritin and address any problems. You are welcome to post these results, including reference ranges (plus units of measurement for Vit D and B12), for comment and suggestions for supplementing where necessary.
All other vitamin levels were ok apart from CRP and TSH being slightly elevated. Vitamin D was the lower end of normal x
sunshineisbetter
CRP could be elevated due to the Hashi's as Hashi's causes inflammation.
Over range TSH is a hypothyroid result but Primary Hypothyroidism isn't diagnosed until TSH goes over 10, which is why I've quoted the Dr Toft article which says that an over range TSH, but not yet reached 10, plus raised antibodies suggests starting Levo.
What are the "OK" levels for your vitamins. Being in range isn't necessarily enough, we need optimal levels which are:
Vit D - 100-150nmol/L
B12 - over 100 is suggested to be a good level for Active B12
Folate - at least half way through range
Ferritin - half way through range
More to follow...
Folate is too low and would be better 10+
Active B12 is very good. Do you supplement?
Ferritin is OK.
What are you doing about Vit D?
I don’t take any supplements. I do eat lots of spinach, rocket and watercress salads?! 🤷♀️ I will need to take a vIt d supplement.
Do these low levels cause thyroid issues or are they as a result of them?
Vit D I would suggest you supplement with 4,000iu D3 daily and retest in 3 months. Once you have reached 100-150nmol you will need to find your maintenance dose which may be 2,000iu daily, maybe more, maybe less, maybe more in winter than summer, so we should test twice a year when supplementing and adjust dose if necessary.vitamindtest.org.uk/index.html
When taking D3 we also need it's important cofactors magnesium and Vit K2-mk7. 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 tissue where it can be deposited and cause problems.
Magnesium helps the body convert D3 into it's usable form.
Magnesium comes in different forms, check to see which would suit you best :
naturalnews.com/046401_magn...
D3 and Vit K2-mk7 are fat soluble and should be taken with dietary fat.
D3 and magnesium should be taken 4 hours away from thyroid meds. Vit K2-mk7 should be taken 2 hours away from thyroid meds.
Don't start all supplements at once, start with one and if no adverse reaction after 2 weeks add the next one, give it another two weeks and again if no adverse reaction add the next, etc. This way if you do have any adverse reactions you will know what caused it.
I emailed GP with the results. They phoned me today to discuss my email and agreed to also check my antibodies on my next thyroid check/blood test in a few weeks time but said that they count for nothing 🤷♀️
sunshineisbetter
but said that they count for nothing
No surprise there, as I mentioned above. In their eyes they don't but they confirm Hashi's, the most common cause of hypothyroidism, but Hashi's can't be treated, it's the resulting hypothyroidism that's treated. As Hashi's can cause gut and absorption problems as mentioned above, if you have these problems and have Hashi's, at least you know the cause, and you can address the problems.
Yes they said they will watch and wait with blood test until my TSH levels rise above 10. Meanwhile I have started addressing the vitamin D to start with (which they also didn’t think was a need to prescribe) x
sunshineisbetter
Yes they said they will watch and wait with blood test until my TSH levels rise above 10.
So they are prolonging the agony for you. If your TSH is over range but not yet reached 10, with raised antibodies and symptoms, you can be started on Levothyroxine. Show them the Dr Toft article I gave you above.
Meanwhile I have started addressing the vitamin D to start with (which they also didn’t think was a need to prescribe)
There's no way they'd prescribe D3 with a Vit D level of 60nmol/L, it's nowhere near deficiency (<30 in most areas) and within the "sufficiency" or "adequate" category of 50-75nmol/L.
I think I will speak to a different GP after my next set of results…..(and beg!!) I’ve had symptoms for months which I made them aware of before I even knew anything about the raised TSH.
I do eat lots of spinach, rocket and watercress salads?! Me too, but my folate levels have been low for years. 🥴
Yes....you should make GP aware of the TPOab result once you've had the next GP bloods done , as 600 is convincingly high ,and definitely confirms an autoimmune cause for thyroid struggling. this will help convince them they will probably need to treat you eventually anyway , so they will be less worried about starting you on Levothyroxine than if they would if they were not sure of the cause of the slightly over range TSH. Also make them aware of the most relevant 'hypothyroid' symptoms.
.....However i might not be too quick to show them the TSH from this latest test....because the TSH results this time look a little better than the previous GP results .. (which doesn't worry me -it's not surprising they wobble around a bit when thyroid is struggling)..... but an unsympathetic GP could use them to say . "see, you're not as bad as you were last month"
Wait and see what next GP results say... and make certain you only do blood test early AM, to make sure TSH is a high as possible.
4 March TSH 4.99 [0.36 -5.33] in -range ......................................fT4 10.2 [8 -16] 27%
19 April TSH 6. 52 [0.36 -5.33] over -range by 24% .................fT4 11.2 [8 -16] 40%
28 April TSH 4. 59 [0. 27 -4.2] over-range by 10% ................. fT4 15.3 [12 -22] 33%
chorobytarczycy.eu/kalkulator %calculator
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels are result of thyroid and affect Thyroid hormone working
Poor gut function with Hashimoto’s 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
healthcheckshop.co.uk/store...?
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
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
drknews.com/changing-your-d...
restartmed.com/hashimotos-g...
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
ncbi.nlm.nih.gov/pubmed/296...
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
ncbi.nlm.nih.gov/pubmed/300...
The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease
nuclmed.gr/wp/wp-content/up...
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
restartmed.com/hashimotos-g...
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.
I had a negative coeliac test a few weeks ago. I get tummy upsets very easily x
So you need to trial strictly gluten free diet...it’s easier than you might expect
Lots of gluten free options available
Does need to be absolutely strictly gluten free to be effective
Separate GF toaster for GF bread or use toaster bags in family toaster. Don’t share butter, jam, cutting board etc
Thank you. Sounds like a good idea. Do you think that I should make all of these changes after the next GP blood test?
Only make one change at a time otherwise you can’t tell what’s helpful or not
Perhaps start with adding vitamin D
I emailed GP with the results. They phoned me today to discuss my email and agreed to also check my antibodies on my next thyroid check/blood test in a few weeks time but said that they count for nothing 🤷♀️
they said they will watch and wait with blood test until my TSH levels rise above 10. Meanwhile I have started addressing the vitamin D to start with (which they also didn’t think was a need to prescribe) x
If TSH is over 5 on two separate occasions (and especially with thyroid antibodies present) you should be prescribed levothyroxine
ALWAYS test as early as possible in morning before eating or drinking anything other than water to get highest TSH
See flow chart on top of page 2
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