Blood test results back; no effing chance of a ... - Thyroid UK

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Blood test results back; no effing chance of a levo increase :(

raggydolly profile image
21 Replies

Just checked online and my blood test results were added late yesterday. Based on my TSH, I have a snowball's chance in hell of getting the doctor to increase my levo. As with the Blue Horizon results I posted 3 days ago, my TSH is low, even though I feel like crap. Vit B12 looks good but ferritin is very low. Still in range though, so "no further action required".

Serum TSH level 0.46 mu/L [0.3 - 4.2]

Serum vitamin B12 level 575 ng/L [197.0 - 771.0]

Serum folate level 8.0 ug/L [4.6 - 18.7]

Serum ferritin level 46 ug/L [13.0 - 150.0]

If anyone has any helpful suggestions about how I can feel better and lose weight, I'd be most grateful. About the only thing I can think of doing right now is supplementing with iron to see if makes a difference. I should probably add Vit D to my shopping list too, just in case.

In addtion to my woes, I can hardly speak my voice is so hoarse. No clue why, as I haven't got a cold. Ugh.

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SlowDragon profile image
SlowDragonAdministrator

Previous post

healthunlocked.com/thyroidu...

So you have Hashimoto’s

Essential to test vitamin D

vitamindtest.org.uk

Are you on strictly gluten free diet?

Or tried it

Do you take levothyroxine in morning or at bedtime?

raggydolly profile image
raggydolly in reply to SlowDragon

I was GF but fell off the wagon a year ago. However, I am resolved to go back to being GF again to see if it helps. I take my levo at bedtime.

Lalatoot profile image
Lalatoot

My voice goes hoarse when undermedicated. When my levo was reduced I lost my voice.

As you will know from on here you need at least FT4 tested with TSH. If you had that then you could argue about optimal dosing.

raggydolly profile image
raggydolly in reply to Lalatoot

I did a private test via BH and it showed my FT4 and FT3 were at the bottom of the range but predictably, the doctor only tested TSH. I'll wait a few days and call for an appt to see if they take any notice of my private test results.

I did wonder if my hoarseness was my thyroid. I've been coughing for months too. Feels like I'm falling to bits!

SlowDragon profile image
SlowDragonAdministrator in reply to raggydolly

Clearly you need dose increase but GP highly unlikely to agree

Probably have low vitamin D, so that’s first step

Strictly gluten free diet...perhaps dairy free too

Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists. You likely need to go over GP’s head to get dose increased and/or T3 added

tukadmin@thyroiduk.org

raggydolly profile image
raggydolly in reply to SlowDragon

Good advice, thank you. How much does a visit to a private endo (approximately)?

SlowDragon profile image
SlowDragonAdministrator in reply to raggydolly

Typically £200-£250 initial consultation

Cheaper on follow up

ALWAYS get FULL thyroid and vitamin testing BEFORE any consultation

Getting all four vitamins optimal first

So ferritin needs improving with iron rich diet

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.

Folate could be better.

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

chriskresser.com/folate-vs-...

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...

Vitamin D needs testing

Absolutely strictly GF frequently often helps or is essential

raggydolly profile image
raggydolly in reply to SlowDragon

I have resolved to stick to GF from now on. I'm also going to try and increase my iron intake via my diet - liver pate on GF bread toast for lunch, yum. Will ask for a Vit D test when I speak to the doctor.

I've printed out my private blood test results and am I'm geared up for a battle to have my levo increased. TSH may be low but it's the FT4 and FT3 that matter, and according to dosage guidelines you linked me to, my medication needs to be higher based on my weight. We'll see how that goes...

Right now, I can't afford a private endo appt. If I can't get a levo increase, I'll see if I can improve things by adjusting by vitamin intake and sticking to GF. Hopefully, that makes a difference.

Thanks for the advice :)

Gophe profile image
Gophe in reply to raggydolly

I may be way off here, but just throwing this on the table: Hashimoto's can give you reflux in your throat (LPR or GERD). This can lead to Barrett's esophagus (and thus an increased risk of esophageal cancer), so worth looking into. Starts with feeling a lump in your throat when you swallow and burping frequently. Can eventually result in hoarseness, coughing, loss of voice.

raggydolly profile image
raggydolly in reply to Gophe

Good point. I am familiar with oesophageal cancer as it happens - my ex-partners father died from it. Not a nice disease at all. :(

Gophe profile image
Gophe in reply to raggydolly

If you think reflux could be the cause, you can ask the doctor to do an endoscopy to check for inflamation in your esophagus.

In the meantime, you can do a bit of a test on your own: If you sleep with your head and throat/upper chest propped up and if you cut out acidic foods, caffeine, tomato, chocolate, onion, garlic, etc for a few days, do the symptoms improve at all?

Kimkat profile image
Kimkat in reply to Gophe

I was diagnosed with acid reflux years ago and since then I have been on omeprazole. I’ve been under ent and speech therapist also but nothing seems to help. I’ve tried sleeping with my head and chest elevated but find it really difficult to sleep in that position, my sleep pattern is rubbish anyway but that makes it worse. It’s interesting that you say that Hashimotos can give your gerd though. I had rai two years ago and have recently been prescribed Levo after testing very high TSH 2months ago, anyhow I did have an endoscopy, also years ago that was inconclusive, so was sent to speech therapy to ‘teach me how to breathe/talk’! At no time has anyone ever put my acid reflux down to my thyroid complaint and when I mention it or the fact that I had a pacemaker fitted two years ago, the endo will disregard it.

Gophe profile image
Gophe in reply to Kimkat

Hi Kimkat. I've had reflux now for several years, and I only recently found out about the Hashimoto's connection. So far, I haven't found a fix for it. (I've never taken the meds because I've heard they do more harm than good.) Other people seem to have beaten it, though. In Isabella Wentz's Thyroid Root Cause book, she said it stopped for her as soon as she went off dairy. And some people have apparently been helped by taking melatonin supplements or by increasing their stomach acid.

I've tried pretty much everything with not luck. Would love to hear from anyone else who's beaten it and how they did it.

Kimkat profile image
Kimkat in reply to Gophe

I’ve taken the meds for so long now and would prefer not to take them but when I do my throat is so painful. I’m supposed to have so much milk/cheese/yoghurts daily for my bone density, I was advised 5 years ago after breaking my ankle and after having a bone density scan, so if I try cutting out dairy I suppose I’ll need to supplement 😐

Canu profile image
Canu

Hi raggydolly. If your FT4 and FT3 were at the bottom of the range, then you may be undermedicated. But, just in case this is not what is happening, it may be helpful to know that being overmedicated can also give you similar symptoms. I had a hoarse voice and was coughing when I was overmedicated. I also had fatigue and other symptoms often connected to an underactive thyroid. It's odd, I know. This link sheds some light:

verywellhealth.com/too-much...

"In some cases, symptoms of being overmedicated can, paradoxically, be similar to those when you are hypothyroid. You may feel more exhausted than usual, or achy and as if you have the flu; you may put on weight, despite feeling jittery and anxious."

"In fact, it's not unheard of for a person to go to the doctor to get tested, certain that they require an increased dosage, only to discover that the symptoms they're experiencing are actually due to overmedication."

raggydolly profile image
raggydolly in reply to Canu

My FT3 and FT4 are at the bottom of the range, so I don't think I am over medicated. But interesting that this causes the exact same symptoms. No wonder people get confused!

Lovecake profile image
Lovecake

Don’t know if it will give you hope, but when my TSH was 0.45 I still felt under medicated. My GP agreed to up my thyroxine meds by 25mcg (🥳)

Over a few months I felt slightly over medicated, so a different GP made me lower again by 25mcg.

Felt dreadful within 2 weeks and had a tough Christmas to struggle through.

Anyway, I then changed to 5 days at the higher dose and 2 days at the lower dose and that helped massively.

Why not ask the doctor if you can add 25mcg 3 times a week for a start and see if they agree and you improve?

You could then do bloods again after 6 weeks and see if your FT4 and FT3 have improved and hopefully you will feel a bit better too.

raggydolly profile image
raggydolly in reply to Lovecake

Yeah I am going to try and ask for an increase up to 100mcg to see if it helps. I can then retest in 8 weeks and see where we're at.

Sharoosz profile image
Sharoosz

My thyroxine was suddenly changed by doctor here in UK (without any consultation with me) to 75mcg from the 112 I'd been taking for several years in Poland. (As someone commented, very irresponsible on his part.) As I had started taking selenium, that may have dropped my TSH result. However, I've had my dosage changed more than once and never felt any different - still tired and gaining weight whether it goes up or down. More evidence that thyroid problems are not "one size fits all" (or nobody, as in the case of tights!)

raggydolly profile image
raggydolly in reply to Sharoosz

That's shocking! Did they change it back?

From everything I have read, there seems to be a very tricky balancing act between the right dosage, vitamins and minerals, and numerous other factors. Hardly surprising that many of us struggle to achieve that balance and feel well.

Totally with you on the tights haha!

Sharoosz profile image
Sharoosz in reply to raggydolly

No they never changed it back and said 'blood test in a year'. Patient needs to be monitored when changing dosage! But that's what happens when GP's, most of whom basically know nothing about thyroid, are charged with supervising patient care in this area. In Poland and probably most EU countries, you are required to be under the care of an endo.

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