Is this as good as it's going to get? I'm new to this forum and infact it's the first time I've dipped my big toe into such waters.

[concinnity]

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

as anticipated

Serum free T4 level 14.3 pmol/L 11.00 - 21.20pmol/L

Please note new reference range from 23/11/20

! 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

01-Apr-2021 Bone profile - (KT15189) - Satisfactory

Serum calcium 2.24 mmol/L

Corrected serum calcium level 2.16 mmol/L 2.15 - 2.60mmol/L

Serum inorganic phosphate 1.15 mmol/L 0.80 - 1.40mmol/L

Serum albumin 46 g/L 35.00 - 50.00g/L

Serum alkaline phosphatase 109 U/L 30.00 - 130.00U/L

01-Apr-2021 Thyroid function test - (KT15189) -

Satisfactory

Serum free T4 level 14.3 pmol/L 11.00 - 21.20pmol/L

Please note new reference range from 23/11/20

Serum TSH level 0.54 mIU/L 0.27 - 4.20mIU/L

01-Apr-2021 ! Full blood count - (KT15189) - Make a

Routine Appointment

! Total white cell count 2.6 X10^9/L 3.70 - 9.50X10^9/L

! Red blood cell (RBC) count 3.43 x10^12/L 4.32 - 5.66x10^12/L

! Haemoglobin estimation 112 g/L 133.00 - 167.00g/L

! Haematocrit 33.6 % 39.00 - 50.00%

Mean corpuscular volume (MCV) 98 fL 82.00 - 98.00fL

! Mean corpusc. haemoglobin(MCH) 32.7 pg 27.30 - 32.60pg

Platelet count 209 x10^9/L 140.00 -

400.00x10^9/L

! Neutrophil count 1.5 x10^9/L 1.70 - 6.10x10^9/L

Eosinophil count 0 x10^9/L 0.00 - 0.50x10^9/L

Basophil count 0 x10^9/L 0.00 - 0.10x10^9/L

Monocyte count 0.3 x10^9/L 0.00 - 0.80x10^9/L

! Lymphocyte count 0.7 x10^9/L 1.00 - 3.20x10^9/L

28-Jan-2021 Thyroid function test - (MM15189) -

Satisfactory

Serum free T4 level 13.5 pmol/L 11.00 - 21.20pmol/L

Please note new reference range from 23/11/20

Serum TSH level 2.31 mIU/L 0.27 - 4.20mIU/L

28-Jan-2021 ! Full blood count - (KT15189) - Make a

Routine Appointment

! Total white cell count 2.3 X10^9/L 3.70 - 9.50X10^9/L

! Red blood cell (RBC) count 3.15 x10^12/L 4.32 - 5.66x10^12/L

! Haemoglobin estimation 103 g/L 133.00 - 167.00g/L HONOUR, James (Mr) Forge Close Surgery

Printed 5:02pm 07-Apr-2021 Page 2 of 2

! Haematocrit 29.9 % 39.00 - 50.00%

Mean corpuscular volume (MCV) 94.9 fL 82.00 - 98.00fL

! Mean corpusc. haemoglobin(MCH) 32.7 pg 27.30 - 32.60pg

Platelet count 179 x10^9/L 140.00 -

400.00x10^9/L

! Neutrophil count 1.3 x10^9/L 1.70 - 6.10x10^9/L

Eosinophil count 0 x10^9/L 0.00 - 0.50x10^9/L

Basophil count 0 x10^9/L 0.00 - 0.10x10^9/L

Monocyte count 0.3 x10^9/L 0.00 - 0.80x10^9/L

! Lymphocyte count 0.7 x10^9/L 1.00 - 3.20x10^9/L

[SlowDragon Administrator]

01-Apr-2021

Serum free T4 level 14.3 pmol/L 11.00 - 21.20pmol/L

! 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

beware 25mcg Northstar is Teva

List of different brands available in U.K.

thyroiduk.org/medications-f...

Teva poll

healthunlocked.com/thyroidu...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

academic.oup.com/jcem/artic...

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

verywellhealth.com/best-tim...

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

[SlowDragon Administrator]

Roughly how much do you weigh in kilo

guidelines on dose levothyroxine by weight

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

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

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.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

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.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

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

[Jazzw]

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?

[SlowDragon Administrator]

Aplastic anaemia is considered autoimmune....so presumably you have autoimmune thyroid disease also called Hashimoto’s

aamds.org/diseases/aplastic...

Essential to test vitamin levels regularly

As Jazzw says likely you have low folate/B12/ferritin levels

[concinnity]

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?

[SlowDragon Administrator in reply to concinnity]

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

verywellhealth.com/best-tim...

[concinnity in reply to SlowDragon]

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?

[SlowDragon Administrator in reply to concinnity]

Levothyroxine should ONLY ever be taken on its own with water on empty stomach (Not with herbal tea)

Ideally no calcium rich foods within four hours of levothyroxine

What vitamin supplements are you currently taking

[concinnity in reply to SlowDragon]

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 Administrator in reply to concinnity]

Remember to stop taking vitamin B complex (or any supplements that contain biotin) a week before ALL blood tests as biotin can falsely affect test

Yes B12 is water soluble....vitamin B complex may be enough to maintain B12 levels.....or you could try adding separate Sublingual B12

Aiming to keep serum B12 over 500

Active B12 over 70

[shaws]

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.

[humanbean]

01-Apr-2021

! Haemoglobin estimation 112 g/L 133.00 - 167.00g/L

28-Jan-2021

! Haemoglobin estimation 103 g/L 133.00 - 167.00g/L

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.

[humanbean in reply to humanbean]

I also wanted to suggest that you join a support group, but the only one I can find in the UK is this one on Facebook :

facebook.com/groups/5821306...

I assume you must already be familiar with this website :

theaat.org.uk/diagnosis-and...

[concinnity in reply to humanbean]

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?