Hi. I have these thyroid blood test results for my wife.
She is 31 and she was diagnosed overtly hypothyroid in 2011. She has never felt well on any dose and has been on as much as 175mcg Levothyroxine. Following a sudden and unexplained reduction in her dosage of Levothyroxine from 150mcg to 25mcg in November 2018 she has had her dosage increased at the start of this month from 75mcg to 75mcg/100mcg alternate days with a repeat thyroid function test due before her 6 week review at endocrinology on 16 May 2019.
We went to a GP appointment yesterday as a consultant she saw at the previous endocrine review advised her to seek GP advice after an extremely high blood pressure reading. She has been getting high blood pressure readings (even when measuring at home) for around about 7 years and she rarely is under any stress.
She had been feeling considerably worse – her feet and toes feel cold to the touch and at times have turned purple from exposure to cold weather, unrelieved by covering herself in a thick blanket. She has been getting easily irritated at work. Lost her appetite and as a result her weight has fallen by 2kg within the space of a couple of days which is not ideal since she is very slim. Sleeping throughout the day even though she gets around about 7 and a half to 8 hours sleep. Twitching in her leg muscles. Eyes continuously appearing dark and puffy despite sleep. Pain and stiffness in her back bad enough to make her hunch forward. Heavy periods which come from nowhere and give her debilitating cramps throughout the 5 days she has them for. She reports the sensation of tiny hammers hitting the bones in her knees, hips and ribs and her speech sounds very slow and thick.
She was asked by the GP yesterday if she was depressed but neither she or I think that she is.
She has been signed off work for 2 weeks because her energy has become so very low and because she works flat out at her job she has reason to believe that she has not realised how sick she was and ran herself ragged.
Her manager at work has been very understanding and has advised her to stay home and rest, but she really doesn't have any idea when she'll feel well enough to go back to work.
She ordered a private blood test back in 2015 to measure both sets of antibodies as only Thyroid Peroxidase has ever been done in the past and the results of the full panel are
I hope to speak more on this site about her situation at some point soon if any more advice can be given but for now, any feedback regarding her bloods would be appreciated, thank you in advance.
28 March 2019 (75mcg Levothyroxine)
*TSH 8.73 mIU/L (0.27 – 4.2)
*Free T4 10.6 pmol/L (12.0 – 22.0)
Free T3 3.3 pmol/L (3.1 – 6.8)
*Thyroid Peroxidase antibody 348.5 IU/mL (<34)
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caja778
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Its pretty obvious that she isnt on enough thyroid medication. 175 is far from a massive dose. the idiot that took her dose right down needs questioning and re educating. Ideally she needs to aim for free t4 at the top of the range and t3 correspondingly so.
Additionally your poor wife needs to make sure her ferritin, iron, b12, folate and d3 are all towards the top end of the ranges.
Its important when going for blood tests, that no thyroid meds have been taken in the preceeding 12 hours. If they have, they can cause a spike, the doctor panics and the meds are reduced.
Suggesy your wife gets herself back to her previous dose and doesnt allow the doctor to work to the tsh.
When meds are sufficient there is no need for tsh to rise. (Mine has been at 0.02 for many many years.)
Everything you describe is indicative of hypothyroidism. Its not going to go away she has an auto immune problem but it can be managed with correct amounts of thyroid meds. Giving up gluten is a good idea too, it keepsthe antibodies from going silly.
Also, she is not gluten free at present since she is doing a gluten challenge but she has reported more bloating and stomach cramps since increasing her gluten intake.
Forgot to mention sorry, she takes vitamin D, folic acid, B12 injections and had iron anaemia dealt with a couple of years ago, her GP has said nothing further needs to be done about monitoring them.
As Galathea said, the dose is too low, I would not be able to function at these levels at all she needs to increase the dose immediately
She should never have had dose reduced in November, if her blood test results were slightly high, (due to Hashimoto's swing) dose sometimes needs slight (12.5mcg or 25mcg ) reduction for a few days or week.
To have cut her dose so drastically was completely wrong and can take months to recover from
She is still extremely hypothyroid.
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2, many of us need TSH well under 1. FT4 should be in top third of range and FT3 at least half way in range
Her high antibodies confirm she has Hashimoto's also called autoimmune thyroid disease
Absolutely essential to regularly retest vitamin D, folate , ferritin and B12. These need to be optimal for thyroid hormones to work well
Request GP tests these Vitamin levels asap or test privately via Medichecks or Blue Horizon
Always get actual results and ranges from GP
Also she needs coeliac blood test
Cutting her Levothyroxine dose will very likely have dramatically reduced all her vitamin levels. They can take months to recover
Low vitamins cause Thyroid hormones to struggle to work, then you get hypothyroid symptoms and vitamins can drop even further.
It's extremely common to need to supplement some or all of these to get them optimal and to break rpthe spiral downward
Heavy periods are classic sign of being hypothyroid and will be likely to be making ferritin (and iron) extremely low. She may need iron infusion, very likely iron supplements. She needs full iron panel testing for Anaemia
Bone pain is frequently low vitamin D
Low B12 and folate are extremely common too
Hashimoto's affects the gut and frequently leads to low stomach acid and then low vitamin levels. Weightloss is then due to poor gut function
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative she can immediately go on strictly gluten free diet
(If test is positive she will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine
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. Though it is the only one for lactose intolerant patients
Hi slowdragon and thank you. Her GP and endocrinologist have both been intervening unfortunately in her dosage, She takes vitamin D, folic acid, B12 injections and had iron anaemia dealt with a couple of years ago, her GP has said nothing further needs to be done about monitoring them but I can certainly provide the most recent set of results.
Also about gluten free: she is currently undergoing the gluten challenge for possible absorption issues and since increasing gluten intake she has been feeling more sick, bloated and crampy.
Thank you reallyfedup! Yes all bloods were done fasting, leaving Levothyroxine for 24 hours and early morning. Her GP and endocrinologist have both been intervening unfortunately in her dosage, She takes vitamin D, folic acid, B12 injections and had iron anaemia dealt with a couple of years ago, her GP has said nothing further needs to be done about monitoring them.
The endocrinologist has given her blood test stickers with barcodes on for further tests - they are
FBC
CAL
FT4
MG
PO4
TF4W
UE
ULFT
TTG
Unfortunately the endocrine clinic she attends is not in the same CCG area as we are and so the hospital in our own CCG area will not accept the blood test sticker labels because they have a different reference or barcode on them. That was what she was told by a nurse at the local hospital when her thyroid bloods were taken, however the lab at that hospital did spin the thyroid blood test sample as a one-off and reported the figures to the endocrine clinic under the other CCG for them to action.
Since changing GPs they have been told not to get involved in any adjustment of thyroid medication without the endocrinologist's permission and she changed endocrinologists towards the end of last year because her previous one insisted there was nothing wrong with her despite normal bloods, would not understand why her TSH went all over the place, refused to acknowledge a low Free T3 at times, would not discuss low vitamin levels with her even though he said he would at subsequent visits and the clinic coordinator told her he sent them a message saying "this patient needs to see me" and he then sent an appointment letter to her the same week. She did not want to see anyone who treated her like that and she sacked him.
She has considered making a complaint about him but I think she should do this when she's more well to do so.
Her GP should not interfere. Endocrinologist is (usually)the expert
Last one sounds like standard diabetes expert, who knows little (if anything) about thyroid
So what are they waiting for on coeliac test?
Getting coeliac blood test done ASAP
Assuming test is negative she can immediately go on strictly gluten free diet
If test is positive she will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially.......can be months....which is totally unacceptable
Private endoscopy is about £1600 including consultation before and after .....(yes been there myself...more on my profile)
By far the majority of Hashimoto's are not coeliac, but that doesn't mean she's not severely gluten intolerant.....far from it
She is likely in the end to need the addition of small dose of T3
But FIRST it's essential to get all four vitamins optimal
These will ALWAYS need regular retesting.
Thousands of us on here use private testing.....it's just not worth the fight to get them done on NHS
Trying Strictly gluten free diet
Possibly dairy free diet
Give adrenals time to recover from recent disaster
Roughly where in the UK are you?
There are thyroid specialists who can and do prescribe T3, including some on NHS
Email Dionne at Thyroid Uk for list of recommended thyroid specialists
Obviously cost of T3 is the reason NHS is reluctant to prescribe. But we are slowly getting post code bans over turned. Private prescription enables access to cheap T3 from Germany
(UK T3 is £206 for 28 tablets - £7.30 per tablet. German T3 - 31 Euro for 100 tablets - approx 30p per tablet)
Looking at DIO2 gene test. Getting positive result can help persuade NHS to prescribe
Medically recognised DNA testing including compulsory counselling
First off, she is only a week into the gluten challenge and she was under the impression she needed to be on it for 6 weeks after reading some sites about coeliac testing. The endocrinologist she is with at the moment has told her she expects a positive TTG result sooner than 6 weeks.
Regarding adrenals, she is to undergo cortisol testing - would the reduction in Levothyroxine dosage skew the results of this?
Her ferritin, folate and B12 were taken December 2018. Vitamin D tested March 2019. Endocrine clinic did her vitamin D and GP is yet to receive the result for this hence why no action taken.
I think I posted the vitamin levels somewhere in a new post but it may not have gone through so this has been removed and results added here instead. She saw a locum GP yesterday, not her usual GP unfortunately which might explain why the locum said what she said.
She will need a medication review at some point. She explained to the locum that she is taking prescribed supplements and her folate is still bottom of the range despite taking folic acid. The locum just smiled at her and said nothing.
My folate has been falling but really low for several years, i recently got a 23and me dna profile. I downloladed the raw data and it revealed that ihave a defective mthfr gene, resulting in my not being able to process folic acid. I changed 6 weeks ago to methyl folate instead ( amazon). And am feeling more energised than i have for years.... might be worth trying methyl folate rather than the folic acid?
Thanks for this. She continued to feel hypothyroid with a below range TSH but the endocrinologist she saw at the time advised her to reduce her dose...yet her FT4 was at the top of the range and her FT3 was at the bottom. She asked what could be done about her FT3, why it was at the bottom and if T3 replacement could be the answer for her.
He told her T3 replacement was not needed in her case.
Have posted these from vitamin/mineral post, sorry.
18 Dec 2018
*Vitamin B12 1444 pg/L (190 - 900) she takes B12 injections quarterly since end of 2016, next one is due this month
Folate 4.2 ng/L (2.5 - 19.5) she takes 5mg folic acid once per day since end of 2016
*Ferritin 328 ng/L (15 - 150) iron anaemia dealt with 2 years ago with iron infusion, GP cannot explain continuing heavy and clotty periods
28 March 2019
*Vitamin D total 24.4 nmol/L
<25 severe
25 - 50 deficient
50 - 75 suboptimal
>75 adequate) she takes 1600IU vitamin D3 on prescription, endocrine clinic ran this test and GP has not yet been able to access these (it does not appear on record of blood test results and no letter has yet been sent to GP either)
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she needs to increase the dose immediately 
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