This is going to be a rather long and complex post about my past history both symptomatically and by blood results. I apologize for the length and depth of the post, but for the first time since my diagnosis I'm at an absolute loss as to how I should proceed.
Sept 2014 - After complaining about fatigue to my doctor and being tested for many things, I met with a doctor who said my results had come back "slightly underactive", and decided to put me on 50mcg Levo. It may be worth noting that this diagnosis came about three weeks after a pretty gruesome knee dislocation which had me off my feet since.
September blood results
TSH - My result 9.5 MU/L Normal Range 0.55 - 4.78 MU/L ***
T4 - My result 17 pmol/L Normal Range 9 - 23 pmol/L
Dec 2014 - My bloods are taken again on 50mcg and all come back alright. From what I can recall, the thyroxine appeared to me to have "taken the edge" off the symptoms somewhat, but the underlying fatigue was still there for the most part.
TSH 1.9 0.55 - 4.78
T4 18 9-23
Jan 2015 til May 2015 - I grew more and more ill as the weeks went by. Struggling to roll out of bed for lectures, unable to take notes during them due to the ADHD type symptoms I was experiencing, dry scalp, weight gain, depression etc. At some point during these months I decided to double my dosage without seeking medical guidance (foolish I know), once again exhibited what seemed to be a symptomatic 'honeymoon period', but would eventually be reduced to what I was before the dosage change. May 2016, 100mcg results:
TSH 1 0.55 - 4.78
T4 17 9 - 23
Summer 2015 - This was a very difficult time for me as I was both having terrible symptoms once again, underwent an MPFL reconstruction on my knee and as a result applied to retake my second year of University again (due to this and the thyroid effects throughout the year on my education). My results from a test in August on 100mcg are as follows (I was upped to 125 following this).
TSH 2.4 0.55-4.78
T4 17 9-23
August - Nov 2015: In keeping with the theme of this story, I experienced more of the same symptoms. While the dry scalp and the weight gain have been an issue, the fatigue is what can only be described as life-ruining at this point. Nov results:
TSH 0.39 0.55-4.78 ***
T4 20 9-23
Dec 2015 - At this point I make the decision to drop out of my second year of university for the second time. After these results I'm put on 100mcg one day, every other day. Dec results:
TSH 0.35 0.55-4.78
T4 23 9-23
Jan 2016 - Sept 2016: This part of the story I have no results for. I decide I'm getting nowhere with the NHS GP's who're only interested in two numbers on a screen. I bite the bullet and travel south to visit Dr Peatfield, who after a lengthy discussion is adamant that I've been misdiagnosed and mistreated by the doctors. From February til May I took no Levothyroxine and felt marginally better for it, the big difference being the zombie-like brain fog being completely removed from my thought. However I didn't feel as drastic a change as I'd hoped I'd feel, with the fatigue being there throughout. I also began to notice some occasional bowel issues & pain occurring (may be coincidental). I conducted one test after 12 weeks of zero levo, and while i don't have the results (conducted at a GP at home after I moved back due to leaving University), both my TSH and T4 were within range.
Sept 2016 - I'm now more tired and depressed than ever I believe. Taking yesterday as a typical day, I woke up at 9am, fell back to sleep 6 hours later at 3pm and naturally awoke this morning 12 hours later at 3am. I'm due to meet with my GP tomorrow to discuss my blood results (see below) and where we move forward from here. I'm predicting he's going to discuss depression and will like the idea of me speaking to somebody for 'emotional support'. I however believe it's a bit of a "chicken or the egg" situation, and believe that there'd be something wrong with me if I weren't depressed about this lethargy that's ruined my life. Blood results:
TSH 1.5 0.55-4.8
T4 16 9-23
I'm basically posting here now as I for the first time feel as though I'm out of options and ideas. I'm not willing to accept a diagnosis of ME or depression given my two year battle with hypothyroidism, whether or not I ever had the bloody illness! When I was diagnosed I was told both by doctors and fellow sufferers online that "this was for life", so what exactly has happened? Has anybody ever experienced or heard of a situation like this before? Does anybody have any advice for me as to how to proceed? I'm willing to look to stretch my student budget to private consultancy but I'm not sure who it is I should be seeing quite frankly.
Thank you if you took the time to read this, once again apologies for the length
Matt
Edit - Extra results as requested
Free T3 - Range = 3.5-6.5
Nov 2015 - 6.4
Dec 2015 - 6.3
Ferritin - Range = 22-322
Sept 2014 (diagnosis) - 125
May 2015 - 157
Dec 2015 - 133
Sept 2016 - 160
B12 -Range = 211-911
Dec 2015 - 460
Sept 2016 - 325
Serum total 25-OH vit D level - Range = Greater than 50
Dec 2015 - 51
Folate - Range = greater than 3.4
Dec 2015 - 23.6
Sept 2016 - 4.2
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mattioso
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TSH 9.5 in Sept 2014 certainly indicated primary hypothyroidism and results when you were taking 100mcg Levothyroxine didn't indicate over medication. Sept 2016 results are euthyroid and don't indicate thyroid dysfunction.
Have thyroid antibodies been tested? I felt desperately ill for 15 months when I had euthyroid Hashimoto's.
Thyroid antibodies have been measured in Sept 2014 (time of diagnosis) and Nov 2015 (while on 125mcg, three months before stopping the levo), both times came back negative
Free T3 was measured a couple of times throughout the ordeal, both times came back at the high end of the range.
All have been measured a few times, most of them were included in the results I got back yesterday (I saw a newish GP who put me in for the routine fatigue tests), all absolutely fine
It would have been helpful if you'd included your Free T3 results with the other figures in your post because they make a difference when trying to work out what is going on.
Can you post your nutrient levels with reference ranges? It would be nice if we could cast a beady eye over them too.
Levels of vitamin d, b12, folate and ferratin, all need to at very good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells.
I've just posted those results now Dragon! I'm not sure whether you saw them or not as I've just edited now, if you could look and see if you think they're sufficient enough that'd be a great help, thank you!
Only start one supplement at a time. Wait at least 10 days to see your reaction ( good or bad) before adding anything else, or you won't know where you are.
All your vitamin levels have dropped since you stopped taking thyroxine. Might be due to low stomach acid which reduces ability to get nutrients in to our body from food eaten.....or a malabsorption issue.
Vitamin D is right at bottom of range (so your GP won't treat or retest). It needs to be around 100 ideally. Supplement D3 - soft gels are good. Or oral vitamin D mouth spray eg by Better You - they do two strengths - 1000iu and 3000iu. You probably need about 4000-5000iu daily. BUT some people find their Vit D levels rise very rapidly when supplementing. we can not get rid of excess so you do need to be careful. You could start at 1000iu and after about week increase to 2000iu daily. test again after a month to 6 weeks. If level still low increase dose. You may need more in winter than summer. Once on stable level we should test/check at least once a year - £28 via City Assay as GP won't
Good vitamin D app for tablet or smart phone - costs £1.50 approx - fill in your test results and get good graphs, check your progress, advice and good to print off and show GP too
Folate is right at bottom of range too - supplement a good quality vitamin B complex - eg Thorne B complex or Jarrows B right.
B12 is falling. Rest of the world bottom of range is 500. Recommended to be high 100's. B12 needs to be absorbed in mouth. Most popular are Jarrows or Solgar lozenges that dissolve slowly under tongue (Personally I use B12 mouth spray by Better You - quicker.)
I know nothing about ferritin
Perhaps consider seeing a gastroenterologist - this may be a gut issue causing malabsorption
Could be lots of causes.......yeast overgrowth, SiBO, candida etc etc
So so interesting that you link this issue to gut health and recommend seeing a gastoenterologist, I'm booked to see one at the beginning of October, as I mentioned I have been having symptoms that do resemble leaky gut. You think there could be a link there then?
I'll get the Vit D supplements ordered today, thank you for the advice
23 years extremely unwell on thyroxine - 23 years of missed diagnosis of gluten intolerance / silent coeliac......low nutrients as result
Apparently my gastro says coeliac blood test often wrong (approx 45% of the time!)
Not one medic, ever mentioned gut as possible issue. But loads of recent research is linking Hashimoto's to leaky gut & low nutrients.
It was all the great advice on here that helped me make the leap to considering malabsorption and the gut connection. Recent endoscopy.
I was born with psoriasis - like many/all other autoimmune diseases this is linked to possible coeliac / low Vit D. I was probably "silent coeliac" from birth. No issues until Hashimoto's diagnosed and unable to process thyroxine.
Looking at that second article now about gluten, given that my antibodies tests came back negative both times, does that mean I'm negative for Hashimoto's and a part of that 10%? Would going gluten free be something which may benefit me?
No, it doesn't. Antibodies fluctuate wildly. Two negative results do not mean you don't have it - 20 negative results wouldn't necessarily mean you don't have it because some people with Hashi's never have raised antibodies. They are diagnosed with a scan of the gland.
Besides, you only had TPO antibodies tested, there are also TgAB, which could be high, when the TPOab are low.
You can have coeliac or gluten intolerance without Hashimoto's (Hashimoto's is name for autoimmune thyroid - diagnosed by high TPO / high TG antibodies)
You can have Hashimoto's without being coeliac......but many, (if not most) with Hashimoto's find gluten free diet improves their health.
This is due to gluten (or glandin) molecule being physically very similar to thyroid molecules (this is called molecular mimicry) and leaky gut allowing gluten to cross into blood stream.
The body can not distinguish between the gluten and thyroid molecules. Antibodies are made to attack the invading gluten molecules (and by default also attacks the thyroid molecules)
Okay, your Free T3 levels are surprisingly high. Definitely no need to worry about conversion!
Ferritin : For the range you've given the middle of it is 172, so your iron could be a smidgen better. But with your most recent result being 160 it hardly seems worth making a fuss about it.
B12 : Your B12 isn't high enough. As you must have read on here before, the Japanese consider deficiency starts below 500. The PA Society recommends 1000 as a good level. B12 isn't poisonous, so supplementing isn't a problem. The B12 that most people do well with is methylcobalamin (although there are always exceptions). The most popular brands are Jarrow Formulas and Solgar who sell 1000mcg and 5000mcg doses. I would think you would be fine with the lower dose.
Vitamin D : 51 nmol/L is too low for vitamin D. You would probably feel better with a level around 100 - 120. Some people go even higher. Take 5000 iU of vitamin D3 for 2 or 3 months, then re-test. Then you have to find the dose that will keep your vit D optimal. For me that is 2000 iU per day. Lots of people take more.
Vitamin D increases absorption of calcium from the diet. You want that calcium to go into bones and teeth, not your brain and arteries. To achieve that you need vitamin K2 and magnesium.
For advice on vitamin K2 dose, look on here and see the Mercola website. SeasideSusie knows about vitamin K2 dosing.
Don't take calcium supplements unless you know you are deficient.
Magnesium supplements - there are loads of different kinds. Magnesium makes some people feel sleepy, so take it in the evening :
Folate : I'm surprised your level was good then dropped so dramatically. It is a good idea to take a B Complex supplement along with the methylcobalamin mentioned above, and the best kinds of B Complex include methylfolate rather than folic acid, and methylcobalamin rather than cyanocobalamin. Personally, I take Thorne Research Basic B Complex, one a day - not cheap though, and I'm sure there are others out there that might be cheaper.
thanks so much for all this! I've gone through and taken all you said into consideration. I know you're not a medical professional (as far as I know) and don't want to put you in a funny position, but do you think these four supplements look suitable given the dosages you've suggested? (couldn't find much on K2, i'll look into it more this evening)
The magnesium citrate sounds fine, although I think you could double that dose without coming to any harm. Personally I take 300mg per day but would be happy to take between 300 and 400mg per day.
Vitamin B Complex - You should avoid supplements with folic acid in :
Hi all, just updating this post with some interesting recent blood test results. I've had a lot done in the last month and will spare you the ones that fell within range
Sept 2016
Test - My result - range
-
- Vitamin D - 33 - greater than 51
- Serum ALT leve - 46 - between 0 & 45 (everything in my liver was the very high end of normal)
- White cell count - 13.1 - between 4 & 11
- Lymphocyte count - 6.1 - between 1 & 4.5
- Folate 4.2 - greater than 3.4 - Recent folate intake may mask deficiency, Folate level in range 3.4-5.3 indicates negative folate balance
- Neutropenia - "Lymphocytosis, Activated lymphocytes +, Film consistent with viral infection"
Finally the most interesting, having not taken my prescribed 125mcg Levo since February
- TSH - 1.5 - between 0.55 & 4.8
- T4 - 16 - between 9 & 23
So to summarize - Low Vit D, high white blood cell & lymphocyte, potentially low folate. If any of your are able to make even a little bit of sense out of this i'll be chuffed, thank you for your help
Im no expert but it looks to me like Dr Peatfield is right, the issue doesn't seem to be with thyroid itself. I would say its probably an adrenal or viral problem affecting your adrenals, and therefore your thyroid. The thyroid hormones will pool in the blood stream if not enough adrenal hormones especially cortisol are present to uptake the thyroid hormones. Dr Peatfield is pretty spot on with thyroid/adrenals so I would trust his diagnosis. He diagnosed me with knackered adrenals and after trying every thyroid hormone supplement available I have reliased he was right.
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