Not sure where to turn now...

[sassytea]

Hello! Hoping someone can help. Bear with as I'll give the whole story...

I had post-partum thyroiditis after my son was born 4 years ago. All sorted itself out after a few months. Then, around a year ago I was diagnosed with hypothyroidism and put on 50mcg of Levothyroxine.

In the past 6 months I have felt worse and worse. Saw my Dr in Dec/Jan who took bloods and I was on the "lower end" of Vit D and Iron range of reference so advised I took over the counter supplements. Been doing that ever since. Returned in Feb to say I still was feeling really unwell but as my bloods had come back all within normal range for TSH/T4 I was told to give the supplements a bit more time to kick in alongside the Levo.

The past month I've felt terrible. I am achey, sleeping terribly, constantly fatigued, feeling low, hair falling out by the handful, weight gain, palpitations and breathlessness etc etc. My legs especially really ache, often waking me up at night. After researching and reading lots I saw a nutritionist/functional medicine Dr who gave me some idea of the kind of things I should be tested for. Somehow I managed to convince the Dr to do most of them (not all!) but every bl**dy thing has come back "normal." All except for ESR, which I need to repeat (20mm).

TSH is at 2.8

T3 is at 4.5

Vit D/B12/Ferratin/Folate/Testosterone/Glucose - all within range.

What is wrong with me? Am I just being a real wuss and need to accept this is how I'm going to feel forever more? I'm 35 and can't even climb the stairs without getting puffed out on a bad day. I'm usually active and do HIIT classes and take personal training but haven't done anything more than once a week gentle exercise for a month coz my energy is so low. I know the current Covid situation will be at play (working, homeschooling 9yr old, entertaining a pre-schooler, housework, helping elderly parents out etc) but I really shouldn't be finding it this hard, right?! Getting to my wits end now.

[NWA6]

Can you add the (range) for your tests?

Eg TSH 2.8 (range) this is usually something like (0.5 -5) and FT3 4.5 (3.5 -6.5)

Each lab have their own ranges so how you interpret the results is unique to each lab.

And do you have your FT4 result?

And can you post your Vits/minerals results. In range doesn’t mean optimal which means there could stilll be room for improvement.

That being said even without your ranges I can say you’re still hypo.

And

[sassytea in reply to NWA6]

Sure apologies, am a total newbie here! Ranges are in [ ] NOt sure if this helps as it's copied from my test results online. No idea how to interpret them!

* iron level 14 umol/l [11 - 25]

* ferritin level 37 ng/ml [10 - 307]

* folate level 6.4 ng/ml [3 - 20]

* vitamin B12 level 399 ng/L [180 - 914]

* testosterone level 0.8 nmol/L [0 - 1.7]

* TSH level 2.8 miu/L [0.27 - 4.2]

* free triiodothyronine level 4.5 pmol/L [3.1 - 6.8]

* Erythrocyte sedimentation rate 20 mm/hr [1 - 12]

* Serum total 25-hydroxy vitamin D level 115 nmol/L

* Haemoglobin A1c level 35 mmol/mol

* Thyroid peroxidase ab's < 15 ku/L [< 60.0] Antibody screen negative.

And here's the full blood count:

Haemoglobin concentration 135 g/L [120.0 - 150.0]

Total white blood count 7.3 [4.0 - 10.0]

Platelet count - observation 245 [150.0 - 400.0]

Haematocrit 42 % [36.0 - 46.0]

Red blood cell count 4.88 [3.8 - 4.8] Outside reference range

Mean cell volume 86 fL [83.0 - 101.0]

Mean cell haemoglobin level 28.0 pg [27.0 - 32.0]

Neutrophil count 4.27 [1.8 - 7.4]

Lymphocyte count 2.21 [1.1 - 3.5]

Monocyte count - observation 0.49 [0.21 - 0.92]

Eosinophil count - observation 0.29 [0.02 - 0.67]

Basophil count 0.03 [0.0 - 0.13]

Nucleated red blood cell count 0.00 10*9/L

Doesn't look like I have the T4 results back...!?

[SlowDragon Administrator in reply to sassytea]

Iron and ferritin are low

Very common when hypothyroid and under medicated, as you currently are

Often heavy periods are classic sign of being hypothyroid, and can make situation worse

humanbean or SeasideSusie may pop along to comment on iron and how to improve

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

dailyiron.net

Links about iron and ferritin

irondisorders.org/Websites/...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

Helpful post about iron supplements and testing

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

[SlowDragon Administrator in reply to sassytea]

Are you supplementing vitamin D as levels are good?

B12 and folate need improving

Do you have any Low B12 symptoms ?

If yes, ask GP for further testing for Pernicious Anaemia before starting any B vitamins

b12deficiency.info/signs-an...

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

[SlowDragon Administrator in reply to sassytea]

Seems odd there’s no Ft4 result?

Ft3 is only 37% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

Indicates you need dose increase in levothyroxine

[NWA6]

Can you @Slowdragon? I’m on my phone and can’t @ because I’m using the app. If you are in via the website then you should be able to @ and Slowdragon is your woman (and others) to help with Vits/minerals.

However your FT3 is low at only 37% through range but this could be bevause your FT4 is too low. You’d really need your FT4 result in order to see what’s going on.

Here’s the range calculator

chorobytarczycy.eu/kalkulator

[fuchsia-pink]

I'd say you are under-medicated. You're only on a "starter dose" of levo. Your TSH is too high -you will feel better when it's less than 1; you don't have a free T4 result, but your free T3 result shows lots of scope to increase without going over-range,

Ferritin and folate both look on the low side to me, but hopefully SeasideSusie or SlowDragon will pop along in a bit - both are excellent on nutrients x

[SlowDragon Administrator]

Welcome to the forum

First thing is 50mcg levothyroxine is only a STARTER dose

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

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

nhs.uk/medicines/levothyrox...

Also note 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

20% of Hashimoto's patients never have raised antibodies

Ask GP for ultrasound scan of thyroid. This can help confirm Hashimoto’s (as TPO antibodies appear to be negative)

healthunlocked.com/thyroidu...

See/contact GP and ask for 25mcg dose increase in levothyroxine

guidelines by weight might help push for dose increase (if GP is reluctant)

Even if we often don’t start on full replacement dose, most people need to increase dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose

NICE guidelines on full replacement dose

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.

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.

RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

[SlowDragon Administrator]

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

Teva and Aristo are the only lactose free tablets

healthunlocked.com/thyroidu...

Teva poll

healthunlocked.com/thyroidu...

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)