I hope you are all well and having a lovely weekend. I was a diagnosed with Hashimotos in 2016 (it was a stressful time so my body at the time was al over the place) now 2019 and I feel worse then ever... Different doctors giving me different information, one doctor telling me I shouldn’t be on the meds, another telling me I will get poorly without the tyroxine!!!!!
My body is struggling, I malt more then my cat, my skin gets dry, I’m anxious on a scale of 100, I get horrendous brain fog, I am tired all the time, no matter what I do no matter what I eat or take!! I’ve been back and forth complaining begging to be seen by a specialist as I started getting other problems (being told once I have one autoimmune disease I’m more then likely to get another, super news) and now nearly three years after the go ahead to see a specialist at the end of may.
This is great news but I am struggling so bad that I made an appt to see a private doctor this week to discuss my thyroid and this doctor believes that I may have only have a antibody problem not a thyroid problem, I have now had to get all bloods from 2016 when I was first diagnosed. I am now a thyroid specialist nor do I really understand it and have been told so much conflicting information... It seems my thyroid has only got worse since being on thyroxine (results below)
July 2016 (prescribed 25mg Levo from this test)
Tsh- 7.6miu/l & T4- 11.6
Sept 2016 (on 25mg Levo told I need to up my dose to 50mg - 2 weeks later told to go up to 100 after they looked at the scale chart)
Tsh- 5.07 & T4- 12.6
Jan 2017 - on 100 Levo
Tsh- 1.2 & T4- 9.6
April 2017 - on 100 Levo
Tsh- 0.2 & T4- 21.9
July 2017 - on 100 Levo
Tsh- 0.86 & T4- 20
Dec 2017 - on 100 Levo
Tsh- 0.19 & T4- 18.5
Sept 2018 - on 100 levo told I need to go down to 75mg
Tsh- 0.18 & T4- 18.8
Jan 2019 - on 75 Levo told I need to go back up to 100levo which I am on now and it does nothing!! I’m exhausted!!
Tsh- 1.08 & T4- 19.2 & T3- 5.2
For those who have had this condition and know about results, am I right in saying the meds haven’t exactly done much? The specialist is now going to review my bloods and now wants me to have more bloods for the other problems!!!
This is ruining my life!! I’m desperate for some clarity but feel I am getting no where, I don’t feel sorry for myself I’m just so tired of it and feeling this way
No vitamins help, no matter what I eat I feel like I’ve been in the swimming pool eyes stinging feeling like I’m going to fall asleep.
I can’t feel this way so if anyone can offer some advice I would hugely appreciate it!!
Thank you, Sam
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We really need to see the reference ranges for your results, they vary from lab to lab so without the ranges results are pretty meaningless. Also, it's important to know that the ranges are the same for every test, if not we can work out what percentage through the range your result is, and that lets us compare the results.
Also important to know is whether the tests were done under the same conditions every time, that's the only way to accurately compare results. Always advised here when booking thyroid tests, we advise:
* Book the first appointment of the morning. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.
* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.
* Leave off Levo for 24 hours before blood draw, if taking NDT or T3 then leave that off for 8-12 hours. Take after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
These are patient to patient tips which we don't discuss with doctors or phlebotomists.
Sept 2018 - on 100 levo told I need to go down to 75mg
Tsh- 0.18 & T4- 18.8
Presumably told to reduce Levo due to TSH being below range? Was your FT4 in range? If so, no need to reduce Levo.
Jan 2019 - on 75 Levo told I need to go back up to 100levo which I am on now and it does nothing!! I’m exhausted!!
Tsh- 1.08 & T4- 19.2 & T3- 5.2
Was this test done 6-8 weeks after increasing to 100mcg Levo?
If you can add the ranges then we can see if our FT4 is in range, top of range or over range, and also see where your FT3 lies within range.
Because you have Hashimoto's, presumably you know something about it? The immune system attacks the thyroid and it is gradually destroyed. The antibodies fluctuate and cause fluctuations in symptoms and test results. When the attack happens, the dying cells release a lot of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range. These are called 'Hashi's flares' or 'swings'. You may get symptoms of being overmedicated (hyper type symptoms) to go along with these results that look as though you are overmedicated. The hyper swings are temporary, and eventually things go back to normal. Test results settle back down and hypo symptoms may return. Thyroid meds can be adjusted slightly at these times if necessary, but will need readjusting when hypo symptoms return.
Unless a GP knows about Hashi's and these hyper type swings, then they panic and reduce or stop your thyroid meds.
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.
You can possibly help reduce the antibodies by adopting a strict gluten free diet which has helped many members here, although there are no guarantees.
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.
Supplementing with selenium l-selenomethionine 200mcg daily can also 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 the following:
Vit D
B12
Folate
Ferritin
These all need to be at optimal levels (not just in range) for thyroid hormone to work properly. Also, low levels and deficiencies bring their own symptoms, some of which overlap with symptoms of hypothyroidism. When you have results, please post them along with their refrence ranges, and units of measurement of Vit D and B12, and we can comment.
Like I say they have never really discussed anything with me, they have just said I have a thyroid condition, one doctor told me I had Hashi’s another said I had hypothyroidism, another said I shouldn’t be on thyroxine as I was borderline! Then different doses, give it time it will get better in time talk, never discussed my results just different doses given
You need vitamin D, folate, ferritin and B12 tested plus both TPO and TG thyroid antibodies
Ask GP to test these or get Full Thyroid and vitamin testing privately
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 Thyroid antibodies are raised
Or after being handed treated. Eg when dose was reduced to 75mcg
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). 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. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, (10% off if order via Thyroid Uk.
Blue Horizon its more random - 23% off today if pay via PayPal
Would suspect you have Hashimoto's
Can't see you have ever had thyroid antibodies tested. Up to 20% with Hashimoto's never have high antibodies. An ultrasound scan of thyroid can help diagnose is antibodies are not high
Hashimoto's almost always 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
Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
Jan 2017 - on 100 Levo Tsh- 1.2 (0.3-5) T4- 9.6 (12-22)
April 2017 - on 100 Levo Tsh- 0.2 (0.27 - 4.2) T4- 21.9 (12-22)
There is a significant difference here in your FT4 - this is the level of thyroid hormone. In January it was well below range, and in April it was at the very top of the range. This is typical of the sort of swing you get with Hashi's. Another reason would be that you'd taken your Levo about 2 hours before your blood draw in April.
None of your other results show such a difference.
Can you check the range for the FT4, a bottom of range of 0.9 isn't normal, with a top of range of 22.7 one might expect the bottom to be around 11 or 12.
Is this on 100mcg Levo?
These results aren't too bad and normally one wouldn't experience exhaustion from hypothyroidism with these results. This is why you need vitamins and minerals tested. Low ferritin causes fatigue.
Who gave you the diagnosis of Hashimoto's and what did they base it on? Have you had thyroid antibodies tested and come back positive - that confirms Hashi's.
When on Levo only, the aim of a treated hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well. So your TSH is good, your FT4 is 74% through it's range and FT3 is 57% through range. Not too bad but maybe your T4:T3 conversion could be a bit better to give a better balance of FT4 and FT3.
Conversion can be helped by optimal nutrient levels, supplementing with selenium, and zinc is supposed to help too. You may want to test selenium and zinc. Also, zinc and copper should be in balance so it's a good idea to test copper as well before supplementing with zinc.
Vitamin d - 82 nmol/L (32.8ng/ml)
This is a bit low. The Vit D Council recommends a level of 125nmol/L (50ng/ml) and the Vit D Society recommends a level of 100-150nmol/L (40-60ng/ml). If you want to improve this level then the Vit D Council recommends supplementing with 2,500iu D3 daily
When 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:
D3 aids absorption of calcium from food and 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 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 tablets/capsules, no necessity if using topical forms of magnesium.
Increased folate may be seen with pernicious anaemia, vegetarian diets, or with a condition called bacterial overgrowth syndrome where bacteria multiply in the upper bowels.
My first doctor in 2016 told me I had hashi’s, then the second doctor told me I shouldn’t of been put on any meds, then I saw another doctor who said I need to be on more as I had hypothyroidism and not Hashi’s then saw the head of the surgery as was concerned with what was the case and he said I had a thyroid condition that needed to be controlled by thyroxine that was that... since then different dosages, still complaining of being knackered.
Have you read the list of all the ingredients, including the shed load of excipients - colours, flavourings, etc, - all of which could potentially cause problems.
We Hypos struggle as it is, and keeping supplements as natural as possible, with as few excipients as possible, has to be better than taking loads of stuff we don't need and don't know what it will do to us, sweeteners are particularly bad. Mannitol in particular is the sweetener in Teva lactose free levothyroxine which has caused endless severe side effects for many members here.
Personally, I would ditch this and if you want Vit C then get something natural like Acerola Cherry powder.
The B vitamins in Berocca aren't worth taking, buy a proper balanced good quality B Complex if you want B vitamins (eg Thorne Basic B or Igennus Super B). B12 is 1mcg, and to raise a low B12 500mcg, even 1000mcg, is what's normally recommended. Also it's cyanocobalamin and that's the wrong form, methylcobalamin is recommended. It contains 200mcg folic acid - this is the wrong form, it's recommende to be methlfolate.
It contains 100mg calcium, calcium should only be taken if we are tested and found to be deficient.
Zinc - this should be tested. It also needs to be balanced with copper.
As it contains caffeine, if you take this less than an hour before/after Levo then it affects Levo's absorption.
As it contains Biotin, it should be left off for 7 days before any blood tests.
As for these results:
My b12 was five on diagnosis at 410 (180-700)
Now b12 is 383 (211.0-911.0)
Is this pmol/L or pg/ml?
If pg/ml then it's not fine according to an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
I was diagnosed with hashimotos in feb. Go told me to tAke selenium 200 one a day, am on 100mcg Lego as well and recently added zinc as read that can help too. I also take b12. I have found that this all,seems to be helling. I feel more normal and energized. I now want to go out and do stuff with the family and even work doesn't feel so much of a chore. I have noticed a real difference in my mood and anxiety has lessened too. I'm due repeat bloods next week.
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