I woke this morning feeling particuraly horrible which is now the new norm but today I wasn't able to endure another day of just getting through it, so I thought I'd share a bit of me for some of you empathic folk out there.
My story begins about 7 years ago when I took myself to the GP feeling extremely tired and the consequence of subsequent blood test showed I had mild anemia, but wasn't disclosed to me at the same time that my TSH levels were borderline, but they were more concerned then about why it was that I was anemic, so therefore was thrown into a myriad of tests some very intrusive to find out and after 2 years of back and forwards to various hospitals I was eventually after quite a painful bone marrow biopsy, I was diagnosed with aplastic anemia, yer what's that? It's where your bone marrow doesn't function correctly, however although my bone marrow has only 10% cell density, I'm currently still functional and as yet do not need medicating.
So were I'm I going with this, well last year I started to feel worse than normal and at the time being in the grasp of covid and because of my condtion I the privalege of being able to contact my heamotologist as and when I felt the need to, which I did and after a few more bloods he said he would test me for testosterone and thyroid functions and guess what, yes my thyroid was out of range but again the only measurement then was the TSH. I was referred back to my GP for further talks and to begin with he wasn't that accommodating-seems to be the overriding rule! Anyway it got to the point where I had blown up probably water and looked as though I'd been in the ring with Tyson Fury that along with all the other debilitating symptoms encompass this condition that he put me on a low dose of Levo, that has increased incrementally now to 100. Now when I got into the bones of my historic tests it turns out that my thyroid has been borderline for at least 7 years and again this measurement was only my TSH level.
Right then after going round the houses with this my question is given my last two bloods and feeling the way I do for the past 7 years I'm convinced that the way I've been feeling isn't a result of my aplastic anemia but my undiagnosed hypothyroidism and the fact I'm not feeling any better on the increased Levo and now I'm experiencing constant pain in my back chest and groin which I don't now whether that's a consequence of the medication or another symptom, so could I do anything else to make me feel and function any better than I currently am, perhaps add t3 or NDT?
Please let me know your thoughts
Thanks for your time, I can bore a glass eye to sleep!
Below are the last 2 test results
01-Apr-2021 ! Thyroid function test - (KT15189) - Results
! Serum free T3 level 2.1 pmol/L 3.10 - 6.80pmol/L
Serum TSH level 0.54 mIU/L 0.27 - 4.20mIU/L
These results show you are very under medicated
You need 25mcg dose increase in levothyroxine and bloods should be retested 6-8 weeks after EACH dose increase
Likely to need further increase in levothyroxine after next test
ESSENTIAL to test vitamin D, folate, ferritin and B12 at least annually.....more frequently initially if results are low
What vitamin supplements are you currently taking?
Which brand of levothyroxine are you currently taking
Do you always get same brand
Many people find Levothyroxine brands are not interchangeable.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Teva, Aristo and Glenmark are the only lactose free tablets
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but doesn’t make 25mcg tablets
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2
When adequately treated, TSH will often be well below one.
Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
SlowDragon ‘s done the honours regarding your thyroid hormone levels—you are indeed very undermedicated. I bet you have a doctor who only looks at TSH and doesn’t realise that FT3 and FT4 levels matter more. That’s alarmingly common—but now you know!
I’ve popped in to mention your MCV levels (mean corpuscular volume). Basically, that’s the size of your red blood cells. And yours are on the rather large side—which can indicate either (or indeed, both) low Vitamin B12 levels or low folate levels.
I would lay a small wager on you having Vit B12 deficiency / folate deficiency, especially given your history. Have they been tested?
Well that was a nice surprise, you must be bored responding to me in the speed that you have and I thank you so much for your alacrity and information. I will have read the comments with some diligence, but for now some answers that I have, the brand of levo is Accord and I think I've been taking that from the outset, I'm currently taking a B complex with Vitamin C just after my breakfast and about 2 to 3 hours after taking the Levo. I have had my b12 folate measured each time I either speak or see my hematologist and I don't recall him ever raising any concerns, however I have a telephone appointment with my GP next week so I will ask to have them done, oh and my weight is currently about 9st 4lbs. With regards to the pains that I'm experiencing any ideas?
You need to click the reply button.....otherwise other person doesn’t get alerted
9st 4lb is 59kilo
59 x 1.6 = approx 100mcg levothyroxine per day as the likely dose levothyroxine you might need
But this is only a guideline and your results suggest you are under medicated and need dose increase in levothyroxine
This might mean you are lactose intolerant. Thyroid patients often develop lactose and/or gluten intolerance
Are you taking levothyroxine correctly
Always on an empty stomach and then nothing apart from water for at least an hour after
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
Good morning and again thank you for your response, I am currently taking 100mcg of the Levothyroxine and I take it with a herbal cold tea about 1 to 2 hours before I have anything to eat. I have as a consequence of reading other comments cut out gluten and lactose for the past 3 months to see if there was a difference, however there has been none thus far. What would be the benefit of taking it at bedtime, might that interfere with my sleep?
Hello again, I shall now only consume with water. I'm currently taking a B complex and occasionally vit D, I do have and very occasionally have a B12 injection as a consequence of some years ago thinking it maybe pernicious anemia, I can't see there's anything problem doing so being as it's water soluble, however my hematologist seems to think otherwise?
SlowDragon is perfectly correct and you have another doctor who has little, if any, knowledge about how to treat a patient who has hypothyroidism.
It is a big learning curve when we're first diagnose, but the worst is to find that we have 'to do it ourself[' with the assistance of many on the forum who are more knowledgeable than the majority of doctors.
Both the above haemoglobion levels show severe anaemia. You mention having aplastic anaemia, which I've heard of but know nothing about. What are the aims of treatment for aplastic anaemia?
Do they just expect you to live feeling dreadful?
Or do they try to overcome the problems inherent in the condition?
Because if it's the latter your doctors are doing a very poor job. If they are doing the former they are doing a grand job. How anyone can be left with such terrible anaemia is beyond me.
There is almost nothing healthy about your Full Blood Count, so I'm not surprised that you feel terrible. But I'm not clear on how you are being helped to feel better. I find it hard to imagine that your thyroid function can be helped much without better treatment of your anaemia. But perhaps the problem is the other way round, and your thyroid needs to be helped in order to help your aplastic anaemia.
Be aware that I'm not a doctor and have no medical training, so my expectations of what your doctors should be trying to achieve may be completely unrealistic.
Thanks for your concern, it is actually both, the trouble is with this condition, it is possible to make things easier short term, however by doing so the medication would create antibodies which would possibly if I get to the point were I need a bone marrow transplant then my body may reject it, it might not but being as this operation is very expensive the NHS would not be willing to potentially be accused of rendering that option risky, so while I'm still able to function, I've just got to get one with it! No body told me life would be easy?
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Results back, GP says 'normal' and no increased Levo needed, gutted... 
ok got my results finally need some - its a looong list. can you guide me here please?
T3 / weight gain 
Are these results ok?
New Results Medichecks and NHS: Suspected Hypothyroidism, Male 40yrs
