Feel like my old self has died: Hi Feeling like I... - Thyroid UK

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Feel like my old self has died

kazb1966 profile image
12 Replies

Hi

Feeling like I don’t really know which way to turn and would welcome any advice please. I don’t really post but read the posts daily. It’s the only way I’ve learnt anything about this god awful illness. After the RAI the Dr said i had Graves but the Dr who did my biopsies said Hashimotos. The first Endo I was under denied I had either. Once my thyroid started to go under he really wasn’t bothered about seeing me anymore even though I told him things were so bad I wanted to drive my car into a wall. Life was awful. I’d also gained 3 stone in a matter of months. My GP has been fabulous, holding his hands up to not fully understanding it all but so very sympathetic. He suggested re-referring me and after a 6 month wait finally got to see a new endo on 1st March.

On the 15th Sept 2017 I increased to 100mg Levo got bloods done on 5th then on Jan this year increased to to 125mg.

Jan results

TSH 1.62 (0.35-5)

FT3 3.1 (2.9-4.9)

FT4 14.3 (9-22)

March results

TSH 0.13 (0.35-5)

FT3 2.6 (2.3-5.1) New reference range by lab

FT4 16.6 (9-22)

Can anybody shed any light on these results I would be very grateful.

I’m on Vit D as a maintenance dose as advised by GP. I also supplement with B12, Magnesium, Zinc and Selinium (the last 3 I started to supplement after reading on this site would be beneficial My Endo agreed

He also referred me for a DEXA bone scan as Levo apparently can cause bone density loss. I’m post menopausal too. Apart from referral of bone scan I don’t feel like he understands everything else I’m going through he also said I’m converting well but as I don’t know how to tell from results that I am I’m hoping someone will explain please

Vit D 55 (50-200)

Ferritin 20 (10-200)

B12 353 (200-910)

Folate 6.9 (3-20)

Thank you so much

Karen

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12 Replies
DeeD123 profile image
DeeD123

Looks like you need a bit of help in the iron panel I’m def no expert but can see your below where you should be. Hopefully one of the lovely knowledgable people on here can help out soon. Good luck.

kazb1966 profile image
kazb1966 in reply toDeeD123

Thankyou DeeD123 I did actually get some Ferrous Sulphate yesterday. GP was happy that I supplemented

in reply tokazb1966

Your ferritin does appear to be on the low side, ideally this should be around 80-90 for optimal thyroid function although some people do better when it is a bit higher. However, if you are taking iron supplements make sure you have your levels checked regularly. Post menopausal women and men should avoid supplementation unless there is a known deficiency as there is no easy way for them to get rid of iron, unlike women who still menustrate.

Your Vit D could do with a nudge up as well. Considering you are supplementing your B12 still looks on the low side, how much B12 do you take?

kazb1966 profile image
kazb1966 in reply to

Thankyou Cassie0707

I had no idea about not being able to get rid of iron. My GP is always happy to let me have bloods done every 6/8 weeks so will ask for bloods to be checked next time around. The B12 I take is actually a B complex and the B12 dose within the tabs is 2.5ug. I take 1. Do you have any ideas about my conversion of T4? Thankyou Karen

in reply tokazb1966

2.5ug is the RDA for B12 so should be fine for your daily needs but worth keeping an eye on it from time to time to check that the levels don't go down.

Iron is one of those goldilocks minerals, you need just the right amount, not too little and not too much. Too much can be a bigger problem than too little.

I find conversion quite difficult to figure out. You are already taking selenium and zinc both of which help with conversion and you will be receiving some iodine in your replacement medication. But... there are other mechanisms that can affect conversion. Your thyroid, your adrenal glands, pituitary and hypothalamus all speak to one another all the time. If your adrenal glands are out of balance this can have an affect on your thyroid by down-regulating it. When trying to increase thyroid meds this can often make you feel worse. Here is a link someone else posted a short while back which gives you a basic idea how this works:-

hormone-zone.com/blog/5950-2/

Hope it is of some help in trying to figure out whether there is something else you need to check out.

TimD250172 profile image
TimD250172

Hi kazb1966,

I also am not an expert but astounded that your gp suggested you’re converting well. I’d say you were far from it at the moment. All of you Vit/Mineral results look like they could do with an improvement which will aid conversion and I’m confident you will get the necessary assistance and advice needed on here to get you feeling better than you currently do.

Hope you feel better soon.

kazb1966 profile image
kazb1966

Thankyou TimD for replying. It was actually the Endo that said I’m converting well. No wonder we all feel like we are going mad at times when the ‘exoerts’ Don’t even appear to know what’s going on

SlowDragon profile image
SlowDragonAdministrator

All your vitamin levels are too low, in all likelihood because you are still under medicated

Your FT3 is far too low. You either need dose increase in Levo or addition of small dose of T3 but important to get vitamins optimal FIRST

Vitamin D needs to be around 100nmol. How much are you currently taking? You need to increase dose. Better You vitamin D mouth spray is good as avoids poor gut function.

Ferritin needs to be at least at 70. Taking vitamin C with each ferrous fumerate will help absorption

B12 and folate also too low. What B12 are you taking. Adding a good vitamin B complex will help folate and keep all B vitamins in balance

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

As you had Hashimoto's/ Graves, even having had RAI, you may find strictly gluten free diet is beneficial

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

tukadmin@thyroiduk.org

Also request list of recommended thyroid specialist, some are T3 friendly

Professor Toft recent article saying, T3 may be necessary for many. Note especially his comments on current inadequate treatment following thyroidectomy or RAI

rcpe.ac.uk/sites/default/fi...

See SeasideSusie many detailed replies on vitamin supplements

diogenes profile image
diogenesRemembering

With an FT4/FT3 ratio well above 6 you are converting very poorly indeed. Ratios of 3/1-4/1 are indicators of good conversion which you certainly are not achieving. Don't know how the endocrinologist could say what they did. Added to FT3 being below range, your treament regime is unsatisfactory. Maybe need T3 to help.

SeasideSusie profile image
SeasideSusieRemembering

I haven't read all the replies, I'm jumping up and down already just reading your post.

My Endo agreed........

......... he also said I’m converting well

And here we have the proof that this endo, and a lot of others, haven't got a clue.

TSH 0.13 (0.35-5)

FT3 2.6 (2.3-5.1)

FT4 16.6 (9-22)

As Diogenes has mentioned below, good conversion takes place when the ratio os 3:1 - 4:1

Your ratio is 16.6/2.6 = 6.38 : 1

One reason why you are feeling so unwell.

You need T3 added to your Levo.

Is the selenium you take the l-selenomethionine form? If it is selenite or selenate it is not as well absorbed as l-selenomethionine .

**

Vit D 55 (50-200)

What is your maintenance dose?

The Vit D Council recommends a level of 100-150nmol/L.

You need to take 5000iu daily at the moment, retest in 3 months, if you've then reached the recommended level you'll need to find a maintenance dose by trial and error. It may be 2000iu daily, maybe more or less, you may need less in summer and more in winter. When supplementing it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/

There are important cofactors needed when taking D3

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds

naturalnews.com/046401_magn...

Check out the other cofactors too.

As you have Hashi's, then an oral spray will be best for absorption. Look at BetterYou. They also do a combined D3/K2-MK7 which you might want to consider rather than a separate K2-MK7.

**

Ferritin 20 (10-200)

This is very low and low ferritin can suggest iron deficiency anaemia. Your GP should do a full blood count and iron panel.

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

Iron tablets should be taken 4 hours away from thyroid meds and 2 hours away from any other medication and supplements as it affects their absorption, and take each one with 1000mg Vit C to aid absorption and help prevent constipation.

**

B12 353 (200-910)

Check to see if you have any signs of B12 deficiency here b12deficiency.info/signs-an... and if you have you will need further testing. 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."

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

"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."

If you have no signs of deficiency then you should supplement with sublingual methylcobalamin, 5000mcg daily to start then when that bottle is finished change to 1000mcg daily. Once my B12 reached 1000 I have been able to reduce to a maintenance dose of 1000mcg twice weekly.

Folate 6.9 (3-20)

Folate and B12 work together. Yours is far too low, it should be at least half way through it's range. A good B Complex containing 400mcg methylfolate will raise your folate level and needs to be taken when supplementing with B12. Have a look at Thorne Basic B which raised mine from very bottom to very top of range in 2.5 months by taking 1 capsule per day. I now take it just a few days a week to maintain my level.

Your B Complex containing 2.5ug B12 will be of no use. That is a miniscule amount of B12 and I expect it contains folic acid and it's methylfolate that's recommended.

Tiredofitall profile image
Tiredofitall

Have you got low cortisol ?

Raali profile image
Raali

No wonder you feel this way your ferritin and B-12 are extremely low! What are your symptoms?

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