Advice on levels for hypo pls?

[Minimouse1]

Hi guys, an update following my post below: I printed off all the info you advised me to send to my GP in relation to their no further action response & in support for asking for an increased dose of levo. GP's answer was: all the evidence I have provided related to women of child being age (I'm 49 had full hysterectomy). They need to be cautious in case of overtreating me. However they said they are willing to increase my dose to by 25mg to 125mg, & wish to re-test levels in 3month rather than the usual 6-8wks. What is opinion on their reply pls?? Is there any argument in that the guidelines etc. refer to women of child bearing age???

ORIGINAL POST: H, I'm currently taking 100mg of levo for hypo & had my bloods done recently for levels. Can someone please advise what my GP should be doing next? I've not spoken to my GP 're the results yet, but as my tests are in range I'm expecting they will take no further action. I have also included a FBC result as there seems to be an issue with a few things, which I think may be related to low immunity??

VITAMIN D - 25 HYDROXY VITAMIN D 114.2 nmol/L

B12 SERUM FOLATE - Serum vitamin B12 level 491 ng/L [211.0 - 911.0]

Serum folate level 15.2 ug/L [3.4 - 15.8]and

Serum TSH level 5.37 mIU/L [0.38 - 5.5]

Serum free T4 level 15.4 pmol/L [10.0 - 18.7]

Serum free triiodothyronine level 3.6 pmol/L [3.5 - 6.5] - FT3??

FULL BLOOD COUNT

Haemoglobin concentration 126 g/L [119.0 - 149.0]

Total white blood count 3.60 10*9/L [3.7 - 10.0]

Below low reference limit

Platelet count - observation 272 10*9/L [150.0 - 450.0]

Red blood cell count 4.16 10*12/L [3.85 - 4.9]

Haematocrit 0.38 L/L [0.35 - 0.46]

Mean cell volume 91.2 fL [82.0 - 100.0]

Mean cell haemoglobin level 30.4 pg [27.0 - 32.5]

Mean cell haemoglobin concentration 333 g/L [316.0 - 365.0]

RDW 12.9 [12.2 - 15.4]

Neutrophil count 2.2 10*9/L [1.7 - 6.6]

Lymphocyte count 0.9 10*9/L [1.0 - 3.0]

Below low reference limit

Monocyte count - observation 0.3 10*9/L [0.2 - 0.8]

Eosinophil count - observation 0.1 10*9/L [0.0 - 0.45]

Basophil count 0.0 10*9/L [0.0 - 0.1]

[bantam12]

Well you need an increase in Levo with a tsh that high and your T3 is also very low. Tsh ideally should be around 1 or below so you have a way to go yet.

[Minimouse1 in reply to bantam12]

I thought so. Looks like I will need to gather evidence to convince my GP of this, as once in range they generally won't do anthing!

[Angel_of_the_North in reply to Minimouse1]

NHS guidelines say that TSH should be under 2 when on thyroxine, so ask why GPO is ignoring guidelines. Your B12 could do with being over 500, too. Sublingual methylcobalamin is what you need

[Minimouse1 in reply to Angel_of_the_North]

As I suspected. The admin staff at my GP's surgery have just rung to say the GP wishes to repeat my FBC in 2 months, and that my vit d level is now fine, so no need to supplement. No mention at all of my b12 or thyroid results!! I asked what the next course of action was with regard to my thyroid & was told no further action - results are normal....

[Angel_of_the_North in reply to Minimouse1]

Ask for a printout of your results - fine is an opinion, not a number. UK law says you are entitled to your results with ranges.

[Minimouse1 in reply to bantam12]

As I suspected. The admin staff at my GP's surgery have just rung to say the GP wishes to repeat my FBC in 2 months, and that my vit d level is now fine, so no need to supplement. No mention at all of my b12 or thyroid results!! I asked what the next course of action was with regard to my thyroid & was told no further action - results are normal....

[SeasideSusie Remembering]

Minimouse1

Serum TSH level 5.37 mIU/L [0.38 - 5.5]

Serum free T4 level 15.4 pmol/L [10.0 - 18.7]

Serum free triiodothyronine level 3.6 pmol/L [3.5 - 6.5] - FT3??

(yes, that's FT3)

You are undermedicated. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their reference ranges, if that is where you feel well.

If your GP doesn't agree then refer him to the following information (which I gave you before in a reply to this thread: healthunlocked.com/thyroidu... :

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):

"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).*"

*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.

You can obtain a copy of the article by emailing Dionne at

[e-mail]

print it and highlight question 6 to show your doctor.

You can also refer to NHS Leeds Teaching Hospitals who say

pathology.leedsth.nhs.uk/pa...

Scroll down to the box

Thyroxine Replacement Therapy in Primary Hypothyroidism

TSH Level .................. This Indicates

0.2 - 2.0 miu/L .......... Sufficient Replacement

> 2.0 miu/L ............ Likely under Replacement

**

VITAMIN D - 25 HYDROXY VITAMIN D 114.2 nmol/L

Improved since last time you posted.

Serum vitamin B12 level 491 ng/L [211.0 - 911.0]

Serum folate level 15.2 ug/L [3.4 - 15.8]

These have improved since last time you posted results for them, presumably you are taking a B complex? Did you leave it off for 7 days before the test?

I would ask your GP if you are worried about your slightly low white blood cell count/lymphocyte count.

[Minimouse1 in reply to SeasideSusie]

Hi SeasideSusie, I'm afraid I didn't stop taking my vitamins before blood draw however now I know this, I will do so in future. I am currently taking vit b12 1000 methylcobalamin, vit d oral spray 1000, K2 100mcg, Selenium 200 & magnesium 125mg - oh and also pure marine collagen. I have printed the pathology report you previously sent as guidance & will now add the above information to that & present to my GP. I'm starting to feel better now but when I have a bit of energy to actually do something i.e. a bit of gardening, then my reserve is used & I'm wiped out for a few days! Yes, I'm worried about the low white blood cell count etc. This was why I went to my GP in the first instance i.e. constantly ill with virus after virus. This was when my 1st blood test was done & showed raised TSH. However there does not seem to have been any improvement in the result of my FBC in over a year. Would I be correct in thinking that if my TSH etc. were at good levels, then this result may improve along with a better immune system??

[SeasideSusie Remembering in reply to Minimouse1]

I know that a low white blood cell count can be due to viral infection, and that low lymphocyte count can be seen where Hashi's is present, but worth discussing any other reasons with your GP.

Would I be correct in thinking that if my TSH etc. were at good levels, then this result may improve along with a better immune system??

If TSH comes down to what is usually a good level for us hypos (i.e. around 1 or lower, generally), then FT4 and FT3 should rise.

[Minimouse1 in reply to SeasideSusie]

As I suspected. The admin staff at my GP's surgery have just rung to say the GP wishes to repeat my FBC in 2 months, and that my vit d level is now fine, so no need to supplement. No mention at all of my b12 or thyroid results!! I asked what the next course of action was with regard to my thyroid & was told no further action - results are normal....

[SeasideSusie Remembering in reply to Minimouse1]

No mention at all of my b12 or thyroid results!!

I'm not surprised, they're in range and your folate is very good, both are better than previously so supplementing is working. Doctors know very little about nutrients so don't expect them to know if they're not optimal, in range is good enough for them.

and that my vit d level is now fine, so no need to supplement

And don't expect them to know that you need a maintenance dose to keep it at a good level.

I asked what the next course of action was with regard to my thyroid & was told no further action - results are normal....

Print off the evidence quoted.

[Minimouse1 in reply to SeasideSusie]

Will do.

[Minimouse1 in reply to Minimouse1]

Hi SeasideSusie, could I just ask do antibody levels also usually go down and settle when all TSH, T3 & vitamins are optimal?? I currently have a tight throat with soreness, & a rash on inside of 1 x lower arm. I've read that this can happen when antibodies are high. I started gluten free diet about a month ago. Thanks.

[Minimouse1 in reply to SeasideSusie]

Hi, an update following my previous post: I printed off all the info you advised me to send to my GP in relation to their no further action response & in support for asking for an increased dose of levo. GP's answer was: all the evidence I have provided related to women of child being age (I'm 49 had full hysterectomy). They need to be cautious in case of overtreating me. However they said they are willing to increase my dose to by 25mg to 125mg, & wish to re-test levels in 3month rather than the usual 6-8wks. What is opinion on their reply pls?? Is there any argument in that the guidelines etc. refer to women of child bearing age???

[SeasideSusie Remembering in reply to Minimouse1]

I don't remember seeing that they relate to women of child bearing age. Have you seen that? Did he point out where it was mentioned?

[Minimouse1 in reply to SeasideSusie]

I wrote to my GP & that was the message that came back via admin staff. Ive read guidelines again & all reference seems to be for non pregnant & from age 18. The only other mention of age refers to avoiding over treatment in the elderly! I assume these guidelines are not sex dependant anyway - surely men have hashi's too.... I'm happy they're increasing my dose anyway, but am unsure about the not re-testing again for 3 months.

[SeasideSusie Remembering in reply to Minimouse1]

I wrote to my GP & that was the message that came back via admin staff. Ive read guidelines again & all reference seems to be for non pregnant & from age 18. The only other mention of age refers to avoiding over treatment in the elderly!

So I think that tells it's own tale. They're making it up. If the GP insists this is only for women of child bearing age, call his bluff and ask him to produce the evidence - I don't think he will be able to.

From NICE Clinical Knowledge Summary re initiation and titration of Levo

cks.nice.org.uk/hypothyroid...

The initial recommended dose is:

◦For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.◾This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.

◦For people aged over 50 years and people with cardiac disease or severe hypothyroidism: 25 micrograms once daily, adjusted in increments of 25 micrograms every 4 weeks according to response.

•Once a stable thyroid-stimulating hormone (TSH) level is achieved and an adequate dose determined, arrange follow up to check thyroid function tests (TFTs) at 4–6 months and then annually.

You will see that their recommendation for titration is to retest every 3-4 weeks (too soon in our opinion though) and once a stable TSH is achieved and adequate dose determined then test after 4-6 months. You are not yet stable and not yet on an adequate dose, so you're still titrating so 3 months is too long.

[Minimouse1 in reply to SeasideSusie]

I am on oestrogen only HRT, I take this at night and my levo in the morning, plus all vitamins in afternoon except magnesium which I take at night with the HRT. So even at 125mg I'm not at top end of allowed dose ie 200mg. Just wondering if levels at next blood draw are still not correct what I should do next as it seems my GP was reluctant to give me this increase, never mind a further one! What course of action is recommended??

[SeasideSusie Remembering in reply to Minimouse1]

Minimouse1

So even at 125mg I'm not at top end of allowed dose ie 200mg

There is no "allowed dose" and if a doctor tells you that then he's talking through an orifice other than his mouth. We need what we need. An old neighbour of mine (female) used to be on 300mcg (it's mcg- microgram - not mg - milligram )

Just wondering if levels at next blood draw are still not correct what I should do next as it seems my GP was reluctant to give me this increase, never mind a further one! What course of action is recommended??

Wait and see what they are, post on the forum and then decide.

[Minimouse1 in reply to SeasideSusie]

Ok thank you

[SlowDragon Administrator]

Guidelines on doseage of Levothyroxine is 1.6mcg per kilo of weight......so you might find this useful as well in arguing for dose increase

Aiming to lower TSH to under 2. Many need TSH under one. FT4 in top third of range

bjgp.org/content/66/651/538

Daily L-T4 requirement is 0.8–1.6 mcg/kg and starting doses typically vary between 50–125 mcg/day. Treatment should be initiated with full replacement doses except in older people or in individuals with cardiac disease, who require smaller starting doses to avoid inducing cardiac ischaemia.4

[Minimouse1 in reply to SlowDragon]

As I suspected. The admin staff at my GP's surgery have just rung to say the GP wishes to repeat my FBC in 2 months, and that my vit d level is now fine, so no need to supplement. No mention at all of my b12 or thyroid results!! I asked what the next course of action was with regard to my thyroid & was told no further action - results are normal....

[SlowDragon Administrator in reply to Minimouse1]

Print out guidelines and go see GP and request 25mcg dose increase in Levothyroxine

Bloods should be retested 6-8 weeks later

pathology.leedsth.nhs.uk/pa...

[Minimouse1 in reply to SlowDragon]

Will do. Thank you.

[Minimouse1 in reply to SlowDragon]

Hi, an update following my previous post: I printed off all the info you advised me to send to my GP in relation to their no further action response & in support for asking for an increased dose of levo. GP's answer was: all the evidence I have provided related to women of child being age (I'm 49 had full hysterectomy). They need to be cautious in case of overtreating me. However they said they are willing to increase my dose to by 25mg to 125mg, & wish to re-test levels in 3month rather than the usual 6-8wks. What is opinion on their reply pls?? Is there any argument in that the guidelines etc. refer to women of child bearing age???

[SlowDragon Administrator in reply to Minimouse1]

Well at least you got dose increase

But no, it's garbage. You need the dose you need. It does reduce slightly for some people in old age, but 49 is not old

As you have had hysterectomy are you on HRt?

This can increase need for higher dose of Levothyroxine

Suggest you get full Thyroid testing privately after 8-10 weeks

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

You should always get same brand of Levothyroxine at every prescription

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

[Minimouse1 in reply to SlowDragon]

I wrote to my GP & that was the message that came back via admin staff. Ive read guidelines again & all reference seems to be for non pregnant & from age 18. The only other mention of age refers to avoiding over treatment in the elderly! I assume these guidelines are not sex dependant anyway - surely men have hashi's too.... I'm happy they're increasing my dose anyway, but am unsure about the not re-testing again for 3 months.

[SlowDragon Administrator in reply to Minimouse1]

Hypothyroid is much more common in women. 9 out of 10 patients are female

Men generally need higher levels

Dose of Levothyroxine as guide is 1.6mcg per kilo of weight

Optimal vitamins are essential

Menopause/HRT frequently upsets levels and/or seems to make conversion of FT4 to FT3 worse

[Minimouse1 in reply to SlowDragon]

Yes, I am on oestrogen only HRT, I take this at night and my levo in the morning, plus all vitamins in afternoon except magnesium which I take at night with the HRT. So even at 125mg I'm not at top end of allowed dose ie 200mg. Just wondering if levels at next blood draw are still not correct what I should do next as it seems my GP was reluctant to give me this increase, never mind a further one! What course of action is recommended??

[SlowDragon Administrator in reply to Minimouse1]

Many people have to go over GP head and see Thyroid specialist endocrinologist if you can't get necessary increases

Email Dionne at Thyroid Uk for list of recommended thyroid specialists

There is recent, incorrect over emphasis on keeping TSH within range on Levothyroxine. For many people on Levothyroxine TSH becomes suppressed before dose is high enough to give good FT4 and FT3 levels

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/

. 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

[e-mail]

Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to have high enough FT3

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

Treating hypothyroidism by looking at TSH is incorrect

pdfs.semanticscholar.org/b2...