First, let me start by saying I've being reading post after post and this forum seems very well informed, helpful and respectful.
My wife and I have been looking for answers to her health condition, which I believe, is Hashimoto's Hypothyroidism, for nearly 10 years! I've taken on the role of researching all of this because my wife just doesn't have the energy to do so with a full time job and her brain fog. The banging my head against the wall is that we've got nowhere with doctors - NHS and private. The private endo we saw didn't even know what a TPO blood test was and he said that just means that she might become hypo in the future. However, she has all of the symptoms of hypo and we can't seem to get anyone to listen. And I've got the point of analysis paralysis.
My question is basically a second opinion on blood test results and then maybe a path to get a diagnosis.
I have a huge amount of test results and don't want to swamp the post with all them. Here are the current main and concerning ones:
TSH - 2.47 mIU/L (42% of range)
FT3 - 3.8 pmol/L (0% of range of the new reference range but this has been 3.4 at it's lowest)
FT4 - 15.1 pmol/L (70% of range)
Thyroglobulin Antibodies - 290kIU/L (2.5 times reference max)
Thyroid Peroxidase Antibodies - 102kIU/L (3 times reference max)
Oestradiol - 501 pmol/L (1.5 times the rerference max)
Vit D - 79 nmol/L (20% of range from medichecks)
Vit B12 Active - 44.7 pmol/L ( bottom 5% range)
Folate Serum - 13.1nmol/L (bottom 20% range)
Ferritin - 71.1 ug/L (30 - 169 Reference range)
All tests were 8:30am, fasted, water only.
Any thoughts or feedback would be greatly appreciated to push me in the right direction. And keep on supporting each other because you guys are doing amazing!
Thanks Chris
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mxnero
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Welcome to the forum and first off how lucky your wife is having you to research her condition for her. The next thing is we need the ranges for those blood tests, it matters because different labs use different ranges and knowing where your wife's results are in the range will allow us to see how high or low her results are.
So for example the lab I use has a range of 12-22 for FT4. So your wife's result of 15.1 is lowish on that range, but if the range was say 9-19 then it would be much better. So if you could repost or edit your reply which you can do by pressing the more button and choosing edit, you can just add the ranges.
Well her FT3, which is the active thyroid hormone that controls metabolism energy levels, brain function and so many more is pretty dire. Her active B12 isnt good either nor her vitamin D levels. Her oestradiol is over range as well, is your wife using birth control pills or HRT?
Sadly if I'm being honest, if these tests were conducted as per forum guidelines, around 9am, fasting and with no biotin for a few days prior to testing, I think you will struggle to get any thyroid treatment at the current time.
Most doctors looking at her results will send a TSH in range and both frees in range. Your wife's FT3 is too low and is probably contributing to her symptoms but as its not out of range I doubt a GP would treat.
Her raised antibodies do mean there's a chance or greater likelihood of her thyroid function becoming worse, but its not a given. It could rumble on for years as it is.
I would query the raised oestradiol result though, if she's not on birth control or HRT. Oestrogen dominance can cause unpleasant symptoms.
I think taking her oestrogen levels further might be an idea. There's a good article here on signs and symptoms of oestrogen dominance / high oestrogen medicalnewstoday.com/articl...
I'm afraid you and your poor wife have experienced the woeful state of thyroid " care" in the UK, although as we have plenty of international members, I'm not sure its much better elsewhere.
We have the highest or certainly one of the highest cut offs in the world for thyroid treatment, some GP's still insist on a TSH of 10 before they'll initiate Levothyroxine. Which is absolutely sadistic if you are suffering.
Elsewhere you can get treatment when your TSH is 3 or over. Some UK GP's will look at very high antibody levels or below range FT4 and 3 as these show the thyroid is struggling. Its very frustrating when you feel so ill and you get fobbed off or offered antidepressants.
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once her serum B12 is over 500 (or Active B12 level has reached 70), she may be able to reduce then stop the B12 and just carry on with the B Complex.
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 until Active B12 at minimum is 70…..ideally over 100
Post discussing how biotin can affect test results
She has severe constipation, only going once per week. She's tried iron tablets many times but has to abandon them because her constipation gets even worse.
She has been on an array of vitamins to help improve and they seemed to make a difference, however, she stopped taking them for a month before the latest blood tests and now they don't seem to be helping.
She isn't post menopause. She's 39.
Periods are extremely heavy and can last weeks. Averaging about 15 days.
She's had fibroids. And had them removed.
She's had a colonoscopy for constipation, doctor gave all clear.
calm vitality magnesium powder is cheap and easy to use. Best start on lowish dose (half teaspoon ) increase slowly until get desired effect. Too much can cause diarrhoea
Dissolve magnesium in small glass warm water and drink while fizzing
She has many symptoms of B12 deficiency. With constipation, fatigue, brain fog and hair falling out at the top of the list. Very interesting about the Pernicious Anaemia because her MCH (mean corpuscular haemoglobin) is high and out of range.
So the confusion comes with, is this a thyroid issue, a vitamins and minerals issue or an iron/anemia issue? They are obviously linked but how do I find the cause?
If hypo or starting to be hypo we can get low stomach acid, which makes breaking down nutrients from food very hard. No matter how good your diet is.
Most of us on the forum have to supplement continuously. Vitamin D, iron, folate and Vitamin B12. I've had deficiencies in all of them and as I have PA I get jabs every 2 months. Plus I also take B12 sublingually in between.
Its not a case of either or, all 4 need to be at optimal levels. And having had all 4 either seperately or together myself its almost impossible to tell the symptoms apart as they can be very similar. It could be that if your wife gets her vitamin and mineral levels to optimal her thyroid function could very well improve.
So the confusion comes with, is this a thyroid issue, a vitamins and minerals issue or an iron/anemia issue? They are obviously linked but how do I find the cause?
Low vitamin levels extremely common when hypothyroid
Or having low vitamin levels will make thyroid sluggish
First step is to improve low vitamin levels and see if
A) symptoms improve
B) thyroid levels improve
Having one autoimmune disease- in this case hashimoto’s, autoimmune thyroid disease makes having other autoimmune diseases more likely
Pernicious Anaemia is autoimmune
Suggest you consider ultrasound scan of thyroid too. This may reveal extent of damage to thyroid
20% of Hashimoto's patients never have raised antibodies
Request coeliac blood test BEFORE considering trial on strictly gluten free diet
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.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to 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 may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
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.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
SlowDragon you are fountain of knowledge! So one of the ways of diagnosing Pernicious Anaemia is whether your red blood cells are larger than normal (direct from the NHS website) and her latest blood test results confirm exactly this!
Thank you so much! And to everyone else that has chipped in. I've gained more information this afternoon from this group than I have in the last 10 years with GPs, NHS and Private!
I've gained more information this afternoon from this group than I have in the last 10 years with GPs, NHS and Private!
That is unfortunately typical
You can read members own thyroid journeys on their profiles. I certainly wouldn’t have regained my health without knowledge on here …..and private testing
I want to call out this advice specifically as it made a big difference for me to understand :
Low vitamin levels extremely common when hypothyroid
Or having low vitamin levels will make thyroid sluggish
First step is to improve low vitamin levels and see if
A) symptoms improve
B) thyroid levels improve
When my daughters thyroid panel started looking underactive… I saw she had low vitamins. I almost jumped the gun and gave her Levo … but at advice of this forum I spent a year improving her vitamins, and her thyroid panel started going in the right direction. I’m still not sure if she will need Levo one day. But for now - her symptoms have gotten better as he vitamins and iron have.
Those 4 vitamins/minerals are essential to one’s thyroid working as best as it can. Whether your wife goes on Levo or not, and whenever that might happen, optimizing and maintaining those vitamins is always an essential thing to do for anyone with a glitchy thyroid! You won’t be wasting your time!
Ps. With those iron numbers, it’s not advised that she needs iron supplements at this moment in time.
Firstly....FT3 is the most important result followed by FT4!
For good health every cell in the body must be flooded with T3 by way of an adequate and constant supply
Her FT3 is miserably low in ref range, compared to a much higher FT4.....( this shows her T4 to T3 conversion is poor
High FT4 with low FT3 = poor conversion
To help support conversion the folowing co-factors must be optimol
VIT D, vit B12, folate and ferritin....again all too low
Vit D:
The Vit D Council, the Vit D Society and Grassroots Health all recommend a level of 100-150nmol/L (40-60ng/ml), with a recent blog post on Grassroots Health mentioning a study which recommends over 125nmol/L (50ng/ml).
Vitamin D should be taken with vit K2, the latter helps calcium reach the hard tissues (eg bones and teeth) and away from soft tissues (eg arteries)
Vit B12:
At least 70 pmol/l
Folate:
Folate is recommended to be at least half way through range
Ferritin:
Optimal ferritin level for thyroid function is 90-110ug/L
So work needs to be done to optimise those nutrients
SlowDragon has offered excellent advice re this and nutrient sources
Her antibodies are high. So, Hashimoto's....a gluten free diet frequently helps
Thyroid hormone levels can fluctuate with Hashi's as the antibodies attack the thyroid killing off the thyroid cells which are then dumped in the blood causing high Free levels... the hyperthyroid stage of Hashi's This is transient and as the attack passes levels will fall back again to hypothyroid level
TSH is not a reliable marker following diagnosis, it fluctuates throughout the day!
"Normal" is not a helpful evaluation....it means very little. We aim to find the actual point within in the reference range where symptoms are resolved?
The evidence is there but thyroid knowledge amongst many medics is woefully poor....they are not adequately taught even at undergrad level.
So basically....
TSH should be 2 or under
FT3 is too low
Supporting nutrients are too low
Expect thyroid hormone results to fluctuate with Hashi's
Symptoms must be part of the diagnosis...this is stated somewhere in guidelines but I've mislaid the link....argh!!
We are all different so cannot be compared with another persons situation.....unlike machinery we cannot all be calibrated to a set point. Medics often forget this.
You have good grounds to support a request for medication.....make a list of your concerns and add supporting evidence
Try asking that she be put on a trial of Levothyroxine......"trial" lets them think they still hold the reins!!
It is tantemount to medical neglect, which is why as someone who needs high dose T3-only to function/live my only option became self medicating
Regarding your second post (now closed), I recommend you start a new post asking for an endo recommendation again, but state the region you live in the title.
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