New person, trying to understand my issue

[Obvs]

Hello,

After seeing doctor in September following a period of tiredness, 'moderate' depression, anxiety and sore thumbs, I had a doctors blood test (after being prescribed antidepressants that I didn't take). The blood test was not flagged up, but I requested a copy as I felt like I had anaemia (what ever that feels like, but I was having irregular very heavy periods and taking daily Berocca, Multivitamins and Spatone to cope with tiredness over at least 2 yrs) and wanted to check a few things. I hadn't fasted before the late morning test. The results were:

HbA1c (diagnos ref rnge)IFCC st - (WH) - 29 (<42)mmol/mol

Full blood count- just out of normal range due to:

MCV 100.2 (80-100)fL

MCH 32.1 (27-32)pg

Lymphocyte count 1.4 (1.5-4.00 10*9/L)

Serum B12 515 (189-883)ng/L

Serum Folate >20 (4.8-19)ug/L (Asked: Is the patient on folate replacement therapy?)

TSH 4.9 (0.4-5.0)mlU/L

freeT4 11 (9-19)pmol/L

serum cholesterol normal: 4.7 mmol/L

HDL1.6 mmol/L

Cholesterol/HDL ratio 2.9

Triglycerides 0.9 mmol/L

Calculated LDL cholesterol lev 2.69 mmol/L

Se non HDL cholesterol level 3.1 mmol/L

I quickly started to learn about the thyroid stopped taking the vitamins etc and got a private fasting blood test in the morning a couple of weeks later:

Ferritin 94.3 (13-150) ug/L

TSH 9.13 (0.27-4.2) mlU/L

free T4 13.6 (12-22.0) pmol/L

free T3 3.65 (3.1-6.8) pmol/L

Anti-Thyroidperoxidase abs <9 (<34) klU/L

Anti-Thyroglobulin Abs <10 (<115) klU/L

B12 Active 150 (37.5-188) pmol/L

Serum folate >45 (8.83-60.8) nmol/L

Vitamin D (25 OH) 79.7 (Deficient <30, Insufficient 30-50, Reduce dose >175) nmol/L

Then I did them again 3 weeks later:

Ferritin 106.0 (13-150) ug/L

TIBC 41.8 (45-72) umol/L

TSH 17 (0.27-4.2) mlU/L

free T4 12.2 (12-22) pmol/L

By this time I felt like I was dying, my chest ached, my left arm felt numb and I had a snagging feeling in my left chest. I couldn't cope with any normal stresses. I saw an endocrinologist privately and she checked me over and listened to my symptoms. She said the blood tests and symptoms were consistent with compensated hypothyroidism and I should be replaced with levothyroxine. I had lost faith in my doctors so changed surgeries.

My Anti bodies still don't show on bloods and they have started me on 25mcg of Levothyroxine. I feel a bit better, but I wonder if I should ask for a higher dose than 50mcg at my next appt to speed a recovery?

My resting heart rate is low (50-54) and it really dips in the early morning/night (42-47)

Any thoughts would be appreciated, thank you in advance.

[StitchFairy]

How long have you been on the 25mcg dose? Are you classed as 'elderly' or do you have any heart issues? If not, then there was probably no good reason not to start you on 50mcg given how high your last TSH was.

[Obvs in reply to StitchFairy]

I’m 49 and usually fit running 15km a week, but have lost a lot of fitness in the last 6 months.

I had been trying all sorts of different grain free diets to address energy levels over the last few years and that perhaps kept the immune system healthier, but then I read that you need a bit more carbohydrate in perimenopause, so reintroduced grain.

Been on levothyroxine nearly two weeks, and certainly felt a bit better at first, but now feel like I’m slowing down again?

[StitchFairy in reply to Obvs]

25mcg is very definitely not enough. You can't address energy levels at all without enough thyroid hormone. It's what your body needs to make literally everything work properly. Don't thunk about trying to exert yourself much at all when you're on such a low dose. Gentle walking round the garden/block and up and down stairs is all you should aim for!

Your dose can be increased to 50mcg right now if your endo agrees. If not it should be certainly be increased after 4 weeks. Have a read of the leaflet inside the box of tablets as I think it might have some info on dosing.

[StitchFairy in reply to StitchFairy]

And I forgot to say that you can't really 'speed' recovery. It takes time for the body to adjust to getting thyroid hormones in dollops from your digestive system instead of your thyroid gland, which would be spurting it out in tiny amounts throughout the day. And a body starved of sufficient hormones for a fair length of time will take a fair length of time to repairs itself. You need lots of patience with this disease There's no quick fix.

[Obvs in reply to StitchFairy]

Thank you, yes I’m a little impatient. I realise that this deficiency takes time to regulate, and I worked out that it might take a year or more to be on the right dosage.

[StitchFairy in reply to Obvs]

Don't worry it's natural to be impatient, I was at the beginning too. It's hard to get your head around this whole thyroid thing. keep reading this forum and you'll learn lots as well as be amongst people who understand what you're going through. Unlike most doctors who haven't the faintest idea how awful this condition makes you feel.

[Obvs in reply to StitchFairy]

Thank you that is very kind and, I’m discovering, very true.

[jimh111]

Your first blood test was marginal so I wouldn't blame your GP. The later blood tests show that your thyroid is failing. Unless you are elderly or have a heart condition it would have been better to start you off on 50 mcg. If your endo appointment isn't soon I would telephone them and ask for a dose increase now. I would be tempted to get the endo to hand over care to your (new) GP after the next appointment, having got the initial diagnosis there's no point paying for more appointments unless you find you aren't recovering in three to six months time. Fasting will not have made a difference to your TSH, early morning blood draw raises it but the biggest effect is time of month if you are a mensurating woman, TSH is much higher mid-cycle. You will probably need your TSH to come down to around 1 or 2 and fT4 to be 18 - 20 ish before you feel well although we are all different.

[Obvs in reply to jimh111]

Thank you, that’s interesting. I didn’t know about TSH being higher mid-cycle.

[jimh111 in reply to Obvs]

See the bottom two graphs in this ncbi.nlm.nih.gov/pmc/articl... .

[Obvs in reply to jimh111]

Very interesting and partly explains the difference between 2nd and 3rd bloods, although my symptoms were also getting worse too.

[jimh111 in reply to Obvs]

Yes you are probably in the early stages of thyroid failure when thyroidal secretion can be erratic. TSH often jumps around so don't treat it with precision, just go by the general level and trend.

[Obvs in reply to jimh111]

Good to know and it makes it easier to digest the change. Can any of this be reversed, in your opinion, or does change of diet etc just ease symptoms?

[jimh111 in reply to Obvs]

I'd just eat a normal diet. If you find something makes you worse then reduce or eliminate it. I don't think diet has any effect for most people, however if you are taking thyroid hormone tablets you should avoid coffee and bran for up to four hours after taking levothyroxine. A simple way to do this is to take the tablets at night.

[Obvs in reply to jimh111]

Thank you. At the moment I take it before 6am, but I’m considering changing to nighttime, just need to prepare food and eat earlier in the evening (difficult when everything takes so long to do)

[SlowDragon Administrator]

Standard starter dose is 50mcg Levothyroxine

Bloods should be retested 6-8 weeks after each dose increase

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

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)

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

NICE guidelines

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.

Because GP's are frequently very reluctant to increase dose the new guidelines from NICE now recommend starting people on full replacement dose .....that's roughly 1.6mcg per kilo of your weight

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.

Come back with new post once you get new results after 6-8 weeks on 50mcg Levothyroxine

If you wear a Fitbit or equivalent....print out weekly summary showing very low resting heart rate

[Obvs in reply to SlowDragon]

Thank you, and yes I went out and bought a Huawei band 4 just before I started the levothyroxine as I was so worried about my heart stopping at night.

[Hidden in reply to Obvs]

I have an under active thyroid and take 125 mcg of Levo. My heart rate is low, often dropping to under 50 during the day and in the mid-40s at night. I mentioned this to my Arrhythmia nurse and she wasn’t in the slightest bit worried.

[Obvs in reply to Hidden]

Thank you. I don’t like it when they say they’re not worried, I know they are trying to be reassuring but you know it’s not right.

I have had some very odd feelings whilst falling asleep and a couple of times my dreams have woken me up feeling very cold and I’ve felt like I’m grinding to a halt.

[Hidden in reply to Obvs]

My Arrhythmia nurse is very switched on working for both a cardiologist and an EP

[Wetsuiter in reply to Hidden]

i am treated like an athlete when my heart rate is recorded (I clearly am not!)

[Obvs in reply to Wetsuiter]

Yes, we’re in a reverse world

[Hidden in reply to Wetsuiter]

At 76 I don’t have that problem 😂

[Buddy195 Administrator]

Welcome to the forum Obvs,

You definitely seem under medicated. I only got my fitness back when dose of Levo was more optimal. Increase from 25 mcg slowly to reduce side effects- most people manage 25mcg increases but for me it has to be in 12.5mcg or I get palpitations. I can now run/ spin again but it did take almost a year. Be kind to yourself- try something new. I took up Pilates for more gentle gym fix! 👍😊

[Obvs in reply to Buddy195]

Thank you. I do yoga too and feel the benefits (and fall completely sleep at the end), but I am worried about losing heart fitness so I split the running up into 4 days/wk.

[Buddy195 Administrator in reply to Obvs]

I do more spinning now than running & that keeps my fitness up. I’ve been doing Pilates a year but feel like I’m still bottom of class as I’m not that flexible. Making small improvements though! 🤣

[Obvs in reply to Buddy195]

Sounds like you are doing plenty 🙂