Still freezing cold on Levothyroxine will I nee... - Thyroid UK

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Still freezing cold on Levothyroxine will I need T3

Peanut31 profile image
16 Replies

I’m just thinking ahead of myself, and with my freezing cold symptoms will I need to add T3?

I’m on 75mcg of Levothyroxine and due a blood test in a few weeks for a further increase with my GP.

I’ve been feeling better, but, it appears my body has got use to this dosage.

I’ve noticed in the mornings I’m freezing cold, this went away, but, now it’s returned with vengeance. I’m wearing pyjamas and socks in bed.

I’ve been taking my temperature in the mornings and it’s 36.1 -36.3. I’ve also noticed my heart rate is 63, (always low)

Here are my results

March 2018 (no medication)

TSH 12.2 (0.27-4.5)

Free T4 10.2 (11.0-23.0)

Free T3 4.12 (3.1-6.8)

With those results started on 50mcg of Levothyroxine

April 2018 (on 50mcg of Levothyroxine)

TSH 4.1 (0.27-4.5)

Free T4 14.2 (11.0-23.0)

Free T3 4.51 (3.1-.8)

With those results GP increased to 75mcg, I’m due another blood test in a few weeks.

I’ve read that it’s T3 that increase metabolism and Levothyroxine doesn’t contain this. I’ve also read GP’s don’t prescribe T3, it’s got to come from an Endocrinologist?

I did see one privately and he diagnosed me with Hashimoto’s, but said no medication would help, he was absolutely useless. Which is when I turned to this forum for help.

I got very ill and went to my allocated GP, who was very cross at the Endocrinologist for not putting me on Levothyroxine and leaving me.

I’m gluten and dairy free.

All my vitamin levels are fine as that one thing the Endocrinologist concentrated on, the only thing!!!.

Obviously, I’ll post my 3rd blood results for advice, but, just wondered if it’s the T3 that deals with your body temperatures?

I would be willing to purchase privately if needs be, if this didn’t work go onto NDT. At the moment I still want to try Levothyroxine and go the NHS route.

I appreciate it’s hard to advise before my 3rd blood results, but just wanted clarification on what T3 does so I’m armed with the information when I see my GP.

Can any one PM me to a reliable supplier of T3 should I need it please.

Best wishes

Peanut31

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16 Replies
beh1 profile image
beh1

A more expert person will come along shortly, but in the meantime I’ll just say that liothyronine is usually needed if your body is poor at converting the levothyroxine (t4) to t3. Your results show your body is doing that job really well. I’m super envious! So I think you may well find you cope really well on levothyroxine alone once you get to the right dose. So, actually, if your vitamins and minerals are all where they should be, this will be helping your conversion.

greygoose profile image
greygoose

beh1 is right, you do appear to be converting very well, but your TSH is still much too high. We'll know more when it gets down to one.

It's true that levo doesn't contain T3, levothyroxine is T4. But T4 converts to T3. You can see that on your blood test results. But, not everyone converts very well, and that's when they need T3. Because, as you say, it's T3 the active hormone that deals with things like metabolism and temperature, and everything else.

Do you have a copy of your nutrient results? I wouldn't trust and endo to know if they were good or not. In general, doctors know absolutely nothing about nutrition. So, if I were you, I'd post those results on here, and let everyone have a look. :)

Peanut31 profile image
Peanut31 in reply to greygoose

Thanks Greygoose

After the idiot Endocrinologist I turned for help with a nutritionist.

We did several food tests and looked at my foods.

I’m eating a lot more healthier, and as said gluten and dairy free.

it’s showed I’m also intolerant to a lot of things, banana, cranberry etc.

I had a health check with GP when I turned 40 and here are my vitamin results taken March 18.

This was before my thyroid issue was finally being addressed with my allocated GP.

March 2018.

Serum vitamin B12 1,091 (197-771)

Another GP phoned me and had a fit at me because my B12 was over, said stop immediately.

As I don’t want it getting low I’m taking a B12 twice a week now instead of everyday.

Serum ferritin 72 (20-130)

started to eat more food with iron and take an iron tablet daily (4 hours away from Levothyroxine).

Serum vitamin D 175 (states levels should be 75)

again GP had a fit. I’ve stopped taking my dosage of vitamin D my Endocrinologist gave me 40,000 IU a week and take 800 twice a week.

I’ve noticed on Levothyroxine my periods are really heavy still, and before my period I feel so dizzy and crave chocolate and sugar!!!!!.

I’m going try and get my iron tested again when I have a thyroid blood test. We don’t normally get given a printed blood test sheet, the nurse asks you what tests you need, so I may get away with an iron test.

Best wishes

Peanut31

greygoose profile image
greygoose in reply to Peanut31

Taking the vit D3 has probably depleted your magnesium, and that's why you crave chocolate. Try taking some magnesium.

Keep an eye on that vit D. 800 twice a weeks is a very, very low maintenance dose! :)

Peanut31 profile image
Peanut31 in reply to greygoose

Sorry greygoose

I take magnesium at night.

I will up my vitamin d dose.

Best wishes

Peanut31

SlowDragon profile image
SlowDragonAdministrator

You are probably just ready for the next dose increase. You won't know if you need to add T3 until TSH is lowere and FT4 towards top of range. Likely to need at least 100mcg daily. Perhaps slightly higher. But only increase in 25mcg steps and retesting each time

Fine tuning with smaller increases may be needed as get nearer ideal result

Peanut31 profile image
Peanut31 in reply to SlowDragon

Thanks SlowDragon for your reply.

It’s greatly appreciated and puts my mind at rest.

Best wishes

Peanut31

shaws profile image
shawsAdministrator

We have to be patient when beginning thyroid hormone replacements. There's no quick fix unfortunately. Levothyroxine is T4 - an inactive hormone and it has to convert to T3 - the Active Hormone.

Levothyroxine is now the only prescribed thyroid hormone replacement in the UK. No doctor can prescribe T3 and Endocrinologists wont either in the UK. At one time they could prescribe NDT. (natural dessicated thyroid hormones).

It has taken years for us to be finally diagnosed as hypo and therefore, we have to build up a dose very gradually. The aim is a TSH of 1 or lower with a Free T3 and Free T4 towards the upper part of the range.

You should have another rise of 25mcg T4 at your next test with increases until TSH is 1 or lower. Some doctors may stop increasing when it is somewhere in the range, which isn't right.

If you are in the UK no doctor will prescribe T3, as you may well be capable of converting levothyroxine (T4) into T3 which it is supposed to do, but we need an optimum dose of levo to do so.

Many have added T3 to T4 and didn't benefit, some switched to NDT and didn't benefit as they thought.

Whereas there seems to be thousands of others who have benefited with levo and they aren't on this forum so it can be a 'hit and miss'.

You are best to give any increase of levothyroxine sufficient time as our body has millions of T3 receptor cells . Then you can source your own T3 to add to levo.

I know what it is like to suffer and the surprise when medication doesn't relieve symptoms but we are dealing with hormones which is different. It is gradual increments and finding the right dose and hormones which make us feel well with relief of all symptoms.

Peanut31 profile image
Peanut31 in reply to shaws

Thanks shaws

Yes I realise it takes time.

Ive had years of thyroid symptoms and never made the connection or GP not mentioned thyroid testing.

It only the last 18 months an acupuncturist suggested I see a doctor as thought it was thyroid related. I only went to the acupuncturist as my neck was so stiff and no physio or giving up the gym helped. I was extremely cold, had anxiety, depression, locked myself away from people, and extremely tired.

I wasted time and money on an idiot Endocrinologist, luckily I came across you guys and your advice has helped no end.

I suppose I lost hope in feeling better again, I’m on the mend, but I’ve lost faith in the profession and don’t want to go back to the black hole.

Best wishes

Peanut31

shaws profile image
shawsAdministrator in reply to Peanut31

Those on this forum have lost faith completely. I diagnosed myself thanks to a first aider's suggestion. If you click on my name it will take you to my Profile and journey.

shaws profile image
shawsAdministrator in reply to Peanut31

It is it important to remember to get the earliest possible test, fasting (you can drink water) and allow a gap of 24 hours from your last dose and test and take afterwards.

Peanut31 profile image
Peanut31 in reply to shaws

Hi shaws

I always make sure my bloods are taken first thing either 8am or 8.30am.

I don’t eat and only have water and don’t take my Levothyroxine that morning.

Best wishes

Peanut31

It is not possible to tell whether you need T3 because of poor conversion as you were undermedicated at your last test - so both free T4 and free t3 were low and TSH much too high. At your next test, which should be 6 weeks after the dose increase, if your TSH is under 1 and your free T4 near the top of the range but your free T3 is mid range or lower, you would need T3 (but you won't get it in the UK unless there is miracle)

Judithdalston profile image
Judithdalston

Like you I wear socks, extra tops, blankets etc while the rest of the family are complaining of the heat. I generally have a morning /basal temperature ( by mouth using mercury glass thermometer) of 35.5 to 36 degree C , and no matter what the dose of levothyroxin over the last 12 years it remains low. Much above 36 C and I have symptoms of other illnesses/viruses. I currently take a small dose of T3 too (however I am a poor converter of T4, you don't as yet look like you are) but as yet not noticed any temperature rise. Researching on / through this website (I think on the late Dr Lowe's archival papers), T3 should elevate basal temperature, but some people never increase their temperature. By the way he stressed the importance of using an old fashioned glass Mercury thermometer as electronic ones were often inaccurate anyway. I presume you did get antibodies tested at some time to be diagnosed Hashimoto's? But your thyroid blood tests indicate you could have yet more T4, as your TSH could be 1 or under. Unfortunately what an endocrinologist or GP suggests is 'normal' for vitamins/ minerals etc might not be ideal for hypothyroidism- have you got, or will get, tests for Vit D, B12, folate and ferritin ( with ranges)- best way to get advice on this forum is to post them here?

Peanut31 profile image
Peanut31 in reply to Judithdalston

Hi, thanks for your reply.

Yes had antibodies present hence diagnosis of Hashimoto’s .

I was looking forward to feeling warm!!!

I don’t know what that feels like, unless I go on holiday abroad and it’s red hot. I’m normally the one on the sun bed with towels all over me.

When we went to America, it was hot, but, all the restaurants had the air conditioners on full blast this was awful I was like an ice block, ended up taking jumpers and towel to cover my legs, whilst people sat there enjoy the air con.

I’ve posted my vitamin results under Greygoose response, but, will repost later.

Best wishes

Peanut31

danym profile image
danym

How are u feeling, are u still feeling cold? I feel i’m freezing every tome after i take my tirosint 😞

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