Any advise for endo appointment?

[nutrenkta]

I have been on my hypo journey for over 10 years now (previously Graves) and since I had T3 added to my treatment 4 years ago, I had pretty much normal life since then. However, last winter I developed severe vit D deficiency and despite being put on supplements, I haven’t got back feeling normal. I have a number of mild symptoms (fatigue, aches & pains, poor concentration, bloatiness etc) that might not even be related to that deficiency but I just feel like I’m slowly falling back into misery of hypo that I thought I overcame years ago. Recently I’ve changed my GP and she was amazing, she agreed to repeat blood tests and referred to endo for a routine check-up. My last tests:

Iron level 26.3 umol/L (11-36)

Ferritin 19 ug/L (14 – 148)

Transferrin saturation index 43.5% (20-40%)

Vitamin B12 243 ng/L (160-925)

Folate 5.8 ug/L (2.90-50)

FT3 4pmol/L (3.10 – 6.80)

FT4 18.7 pmol/L (12 – 22)

THS 0.01 (suppressed by liothyronine)

Cholesterol 5.2 mmol/L (0-5)

LDL cholesterol 3.1 mmol/L (0-3)

All these years my iron and B12 sat on the lower end of the range with occasional deficiencies but none of the GPs were concerned about that so I’ve been supplementing myself most of the time. When discussing my bloods with the GP, it seemed that the only concern was my raised cholesterol which has been like that for about 2 years now despite me having healthy diet and active lifestyle. I’m myself concerned about lowish FT3 and wondering whether it’s what causing me to feel run down. Currently I’m on 150mcg Levothyroxine and 20mcg Liothyronine, I'm female & 29 years old. I’m seeing endo in a month and some advises would be greatly appreciated.

[greygoose]

Your cholesterol is high because your FT3 is low. The two go together, and I just wish doctors knew that! Your cholesterol level has little to do with your diet and/or lifestyle. It's made in the liver, and slightly over-range like yours is of not concern at all - except that it raises questions about your FT3 level. I do hope you're not on a low-fat diet!

How long have you been taking 20 mcg T3? You don't seem to be absorbing it very well. How do you take it? All in one go or split? Do you always take it on an empty stomach, just the same as levo?

How have you been supplementing your B12? Sublingual methylcobalamin? How much? Do you take a B complex with it?

[nutrenkta in reply to greygoose]

Hi Greygoose, thank you so much for the reply. I wasn't aware of the connection between FT3 and cholesterol, I'll dig into that. And no, I'm not on low fat diet. What I found over the years that increasing healthy fats and cutting on carbs gives me more energy, stops cravings and takes the strain off my digestive system. However, my last GP was still insisting that maybe I'm just eating too much cheese (eyeroll).

I've been on T3 for 4 years now, I had to take some extreme measures to get it prescribed but it worked. I was only in my mid twenties but already felt like I was on the death bed. I split the dose in half, morning dose I take with levo about 40min before coffee and food but due to my irregular working hours, my evening dose sometimes is taken just before or after dinner, rarely on empty stomach. It's always been like that and didn't seem to have a problem before. Do you think that could affect the absorption? Also, it's the 3rd different brand of T3 I'm currently taking. Could that make a difference? I normally do take sublingual methylcobalamin of 1000 but not the whole vit B complex as I'm not sure how of what to take as I don't want to overdo it with supplements, considering I'm eating well. Again, thank you so much for taking your time to reply, I really appreciate that as it gives me something to work with!

[greygoose in reply to nutrenkta]

I really don't think eating cheese raises your cholesterol - the more cheese you eat, the less cholesterol the liver will make. But, when T3 is low, the body can't process cholesterol properly and it builds up in the blood.

It's always been like that and didn't seem to have a problem before.

Taking T3 close to food, coffee, etc, will affect absorption, for sure. We see that time and time again on here. People believe that they can take T3 with food, but when they post their results, the numbers say otherwise. The FT3 level does not match the dose taken. It may have worked for you before, but maybe you just need more T3 now, because you're converting less of the T4. It could be to do with the brand you're taking now, but I've tried quite a few brands, and not felt much difference between them. But, that is a very individual thing. Why not try taking your all your T3 in one go, with your levo, an hour before food and coffee, and see if you get better absorption. Or take your second dose at a time when it is possible to take it away from food.

It could very well be that 1000 mcg methylcobalamin is not enough for you. With a level like that, I would be taking 5000 mcg. You do need to take a B complex, because the Bs all work together, and need to be kept balance - and just because you're eating well, doesn't mean that you are absorbing all the nutrients from your food. You are not what you eat, you are what you absorb. You won't get much benefit from that B12 if you don't take the other Bs with it.

[nutrenkta in reply to greygoose]

It does make a lot of sense what you said above. I think after I started taking T3 and fully recovered, I almost forgot I’ve got a life long condition which means you always have to be alert and monitor yourself.

I tried to take the whole dose of T3 before but I didn’t feel well, it was like drinking 7 espresso cups in one go. I found that splitting in half works the best for me. Now, will try to take my evening dose on empty stomach. Thanks for advising on B12, I’ll keep that for later because now I won’t take anything until the next blood test in January.

Thanks for taking your time to reply me

[greygoose in reply to nutrenkta]

You're welcome.

[SeasideSusie Remembering]

nutrenkta

I don't have any advice for your endo appointment, I avoid them like the plague after a disastrous encounter back in 2002. The only thing I would say is that most CCGs are withdrawing T3 where they can so you may have to fight to keep yours.

As for your test results:

FT3 4pmol/L (3.10 – 6.80)

FT4 18.7 pmol/L (12 – 22)

THS 0.01 (suppressed by liothyronine)

For someone taking T3, your FT3 is very low, one would expect to see this in the upper part of it's range. Low T3 causes symptoms and this is likely to be part of your problem. If you are allowed to keep your prescription for T3, I have my doubts whether you would be allowed an increase in dose, but you could certainly ask on the basis of how low your FT3 is.

Your cholesterol is likely raised because with your low FT3 you are not optimally medicated and are showing signs of hypothyroidism, and raised cholesterol is one of the signs and symptoms of hypothyroidism.

Iron level 26.3 umol/L (11-36)

Ferritin 19 ug/L (14 – 148)

Transferrin saturation index 43.5% (20-40%)

Also adding to your problem is your dire ferritin level. It's said that for thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range. However, because your transferrin saturation is over range and your serum iron is a very good 61% through range (recommended is 55%-70%, with the higher end being for males) then taking iron tablets isn't the answer because that would likely raise your serum iron level as well. This is something that you should discuss with your doctor, find a way to raise your ferritin without raising your serum iron.

You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

Vitamin B12 243 ng/L (160-925)

This is on the low side. I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:

"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."

Do you have any signs of B12 deficiency - check here

b12deficiency.info/signs-an...

If so you should ask your GP to test for B12 deficiency/pernicious anaemia.

Folate 5.8 ug/L (2.90-50)

This is low. Folate is recommended to be at least half way through it's range, so 27.5+ with that range. Eating folate rich foods and a good B Complex containing methylfolate not folic acid can help there.

If you do have signs of B12 deficiency then don't supplement with B Complex until further testing has been carried out as the methylfolate (folic acid) will mask signs of B12 deficiency. Obviously don't supplement with B12 either until after testing.

An extract from the book, "Could it be B12?" by Sally M. Pacholok says:

"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."

pg/ml is the same as ng/L so those levels apply to your result.

If you don't have any signs of B12 deficiency then you could supplement with sublingual methylcobalamin lozenges plus a good B Complex to balance all the B vitamins - look at Thorne Basic B or Igennus Super B for a B Complex.

You really should have Vit D tested as well to complete the vitamin/mineral picture, when one is low with some, it's often the case that all are low. If your GP wont test Vit D then you can do a home fingerprick blood spot test for £29 with vitamindtest.org.uk/

It's possible that these low nutrient levels are connected with how you feel, as well as your low T3, so they need optimising too.

[nutrenkta in reply to SeasideSusie]

Hi Susie, thank you for getting back to me. I'm with you on that endo business, I myself was a bit traumatized with the amount of ignorance I was treated despite being severely ill. I was hoping I won't have to go back there for many years to come but my GP doesn't want to play around with my meds and wants an endo to review my current situation. I'm terrified of him/her wanting to take me off T3 but I'm ready to get aggressive, like I did last time and that's why I'm asking for an advise so I can do my research and be well equipped with the knowledge. Facts are correct by default and even the most ignorant doctors sometimes have to give in thank you for such in depth response, at least I have some clues now which direction I should be heading to. You and greygoose are huge help for me, massively appreciate that! Also, I'm reassured I'm not just a hypochondriac