Hello, my sister is showing a lot of symptoms I thought we’re thyroid related. She has depression, weight gain, a small lump on the left side of the thyroid gland and about 2 months ago her eyelids and around the eyes became very swollen. She went for blood tests and just the day after the test the doctor called with the results but only mentioned low vitamin D (it’s very low at 12.3) plus low iron levels. Today we asked for a printout of the results which the receptionist provided.
Under the thyroid result it says ‘results in hypothyroid range’ and these results were in bold print like the other results that were not within a normal range. I’m having trouble understanding them. The result shows:
TSH 145
Free T4 2.6
I can’t understand the TSH reading because there’s no decimal point, it says normal is between 0.2-4.0 so 145 makes no sense to me.
Her cholesterol is also high at 7.8 which I’ve read can be related to hypo. Also her ferritin level is only 5, which I’ve also read can result in the thyroid not being able to work properly. Her white blood cells are slightly elevated at 11.4.
Does anyone know if a thyroid result like that means she does have hypo? If so I can’t understand why the doc hasn’t told her or treated her.
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She should make an urgent appointment and ask the doctor why a very high over range TSH and very low below range FT4, coupled with the lab's comment about the results being in hypothyroid range, have all been ignored.
If this is the first abnormal result it could be that they wish to repeat the test in a few weeks, sometimes abnormal results can be due to non-thyroidal illness.
What is being done about her severe Vit D deficiency and her dire Ferritin level? She should be having loading doses of D3 and an iron panel and full blood count to see if she had iron deficiency anaemia.
Thanks Susie! So TSH levels can be as high as 145?! I have the lab results here and I think they did the full blood count, these are the other results shown as out of range:
Haemoglobin 98
Haematocrit (PTC) 0.306
Red blood count 3.65
Mean cell haemoglobin 26.8
I’m not sure if this means anaemia. I think she’s had this problem for years but only recently the symptoms have become so bad they can’t be ignored, she’s always freezing cold these days when she never felt the cold easily before. I’m also wondering if the terrible headaches she’s had over the years are related also, sometimes they last for days.
The doctor has prescribed 20,000 IU vit D to be taken twice a week for 7 weeks and 210mg of ferrous fumarate 3x a day for the iron. She also asked my sister to go back in January but when my sister asked why she just said for a routine checkup.
Yes indeed, some people have had TSH even higher. To be honest, if there is definitely no mistake with the figures for TSH and FT4, then I'm actually surprised she can get out of bed. With FT4 at 2.6, even though you haven't given the reference range (which could be 7-17, 9-19, 11-23, 12-22 or something else), it's so low she's barely making any thyroid hormone at all. Our whole body relies on thyroid hormone.
She must ask, as a matter of urgency - today - if those figures are definitely correct - why nothing has been said and nothing has been done about them.
Haemoglobin 98
Haematocrit (PTC) 0.306
Red blood count 3.65
Mean cell haemoglobin 26.8
You haven't given any ranges (please always add ranges when giving results, they vary from lab to lab so we always need ranges to interpret results) so I can't say how out of range these are. However, haemoglobin 98 I expect is below range (I think that starts at about 118 or something) and Mean Cell Haemoglobin at my surgery starts at 27, so I would say, coupled with her dire ferritin level, it's probably iron deficiency anaemia. The usual treatment is 3 x ferrous fumarate daily so at least that's being addressed. Her iron must be monitored, she must ensure that she is retested and that it is improving.
Iron tablets are best absorbed on an empty stomach but that can cause stomach upset, in that case it can be taken with food. Also, each iron tablet should be taken with Vit C to aid absorption and help prevent constipation - 1000mg with each tablet if she can manage that, otherwise try 500mg.
Iron tablets must be taken 2 hours away from any other medication and supplements. If she is put on Levothyroxine then that must be taken 4 hours away from the iron otherwise absorption will be affected.
Vit D: 12.3 (presumably this is nmol/L?)
The doctor has prescribed 20,000 IU vit D to be taken twice a week for 7 weeks
So she has been prescribed loading doses. Once these are finished it's essential that her Vit D level is retested. Most doctors don't retest and just prescribe 800iu D3. This is not enough. If GP wont retest then she should do a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
Post her new result when she's been retested and we can work out what her next dose will be, it will definitely be more than 800iu and she will probably be better off buying her own then.
What exactly has the GP prescribed here - the name of the medication? Hopefully one not containing calcium (unless calcium has also been tested and found to be low).
The Vit D Council recommends a level of 125nmol/L (50ng/ml) and the Vit D Society recommends a level of 100-150nmol/L (40-60ng/ml) - doctors wont agree with this, they just want to see it over 50nmol/L then they are satisfied.
When she has reached the recommended level then she'll need a maintenance dose to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range.
Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3 as recommended by the Vit D Council
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking tablets/capsules/softgels, no necessity if using an oral spray.
Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking tablets/capsules, no necessity if using topical forms of magnesium.
Check out the other cofactors too (some of which can be obtained from food).
** It's important not to start all supplements at once. Start with one, give it a week or two and if no adverse reaction then add the next one. Again, wait a week or two and if no adverse reaction add the next one. Continue like this. If there are any adverse reactions then you will know what caused it.
**
Because of her dire Vit D and ferritin, it's essential to test B12 and folate as these could also be low or deficient.
Autoimmune thyroid disease (aka Hashimoto's) can cause low nutrient levels and deficiencies and because of the results she already knows about it would be a good idea to test thyroid antibodies. She should ask her GP, she may be able to get Thyroid Peroxidase antibodies tested, she can also as for Thyroglobulin antibodies to be tested but this generally isn't done at primary level, it's usually only done when requested by an endo.
Difficult to decide what the doctor is thinking but normal practice would probably include two independent tests to check the validity of having a thyroid issue. But the results do match your thyroid feelings. I would ask her to query the TSH figure for clarity and say she is worried about it. Get started on improving the vitamin D, has she been prescribed anything? Ask her to ask the doctor about iron panel tests and also B12. It’s not just thyroid meds that help the thyroid but usually suggested asking for Vit D, B12, folate and ferritin you be tested. Doctor then may prescribe medication if results are dire but may stop them when things improve. Lots of us need to supplement but that usually means for life but she may find a maintenance dose once she is optimal, not just in range. But also advised to add in medication one at a time incase something upsets. Taking a load of something new all at once would mean if there is an issue she wouldn’t know which one is causing it. As thyroid sufferers we tend to keep losing these supplements hence having to keep the levels where they should be. I learnt a lot by reading through posts but realise that many of us are learning as well but it will give an idea as to what it’s all about but she can also keep asking questions and see what others think and what she feels may be best for her. I can appreciate how poorly she is feeling but let’s hope after the second test the doctor becomes more proactive if results again scream thyroid!
She is severely hypothyroid and should have been put straight on levothyroxine. What does doctor say? Also she probably needs an iron infusion and loading dose of vitamin D
Thanks so much for the replies and advice guys, I’ve made notes on everything. The form of vitamin D my sister has been prescribed is colecaliferol 20,000iu twice a week for 7 days. She’s opted to take the kind I gave her a few weeks ago instead because It has K2 (MK7) in it and she can take smaller doses because we heard too big a dose can shock the system and make her feel worse if the levels are so low to start with, but she’s still going to be taking 40,000iu a week.
She’s only just starting the iron tablets today, it would have been the same day as her results if we’d known the levels of ferritin were so low but everything seems to have been played down to her, really shocking when we actually got to see these levels on paper and the serious problems they can cause.
Even though she’s been so ill she struggled a lot to get around to making appointments and go in for blood tests because I think this illness really stopped her caring about herself and she would get annoyed if pushed to see the doc.
She had booked the first appointment back at the end of September but then my dad fell and was diagnosed with advanced prostate cancer so she missed her appointment. I think the stress of his diagnosis made her condition worse because that’s when her eyelids became swollen.
The blood test was on the 28th of November at 11:10 and I made sure she hadn’t eaten before it and had only drank water.
I’ve listed all abnormal results below with the ranges. Her kidney test (EGFR) showed as 48 but wasn’t flagged, I looked it up though and from a search online that might be a bit too low, I’m not sure because I couldn’t see a range near it.
TSH 145 (0.2-4.0)
Free T4 2.6 (11-22.6)
(Note added by lab that says results in hypothyroid range)
Ferritin 5 (10-291)
Cholesterol 7.8 (no range shown but result is in bold with a * near it like all other abnormal ranges)
Heamoglobin 98 (115-150)
White blood count 11.4 (3.5-11.00)
Haematocrit 0.306 (0.36-0.46)
Red blood count 3.65 (3.80-5.00)
Mean cell haemoglobin 26.8 (27.5-32.5)
All other results such as liver function, diabetes etc are in the normal range.
After I showed her the replies from this forum she called the doctor around 12:00 to ask why no treatment has been offered for the hypo and why it wasn’t even mentioned when they called with her results, they told her the doctor will call back but she’s still waiting. They close at 6:30pm so I told her to call before then if they haven’t been in touch still.
She has an ultrasound booked on the 2nd of Jan for the small lump to the left of her thyroid gland and a doctors follow up appointment on the 8th of Jan. We definitely don’t wanna wait that long with results like this, maybe the doc just completely overlooked it, just seems odd when the whole point of the test was because we suspected thyroid disfunction and the investigation was noted as the reason for the test.
She’s going to be using a magnesium spray from bed time tonight to help the vit D work properly. I’ll post again with the doctors response. Thanks for all the help, we really appreciate it x
She does but now that she knows why she’s been feeling so unwell I think it’s helped a bit because she knows there’s a reason for it and that it’s possible to get better with treatment.
The doctor hadn’t called her still by 6pm so I called to remind them but the receptionist said the doctor has gone home and said she will call my sister tomorrow morning. Really not happy with the way her doc has handled things so far.
Hi guys, the doctor called my sister. She apologised and said she had a lot of blood test results on the same day as my sisters, so it looks like she didn’t notice the thyroid levels. She said she does need treatment and she’s asked the receptionist to get her an appointment hopefully within the next week.
I’m so glad we got that printout and that I asked for advice on here or my sister might have been left untreated for god knows how long. I’ll let you know what happens at the appointment. She’s getting pretty bad headaches since taking the vit D, they seem to start just after taking it but luckily no adverse reaction to the first iron tablet she took last night. Thank you so much for the help x
She apologised and said she had a lot of blood test results on the same day as my sisters, so it looks like she didn’t notice the thyroid levels.
Absolutely no excuse. She is highly trained and paid a lot of money. It's her job to be thorough. She ordered the tests, the least she can do is pay attention and read the results properly.
She said she does need treatment and she’s asked the receptionist to get her an appointment hopefully within the next week.
What!!! Why the wait. She now has been alerted to the results, your sister is very hypothyroid, she doesn't need another appointment to discuss it, she needs a prescription for Levothyroxine. What's wrong with a prescription being left for her to pick up today and start her Levo today or tomorrow? This is urgent, she should not have to wait. If the doctor wants to see her, give her an urgent appointment today for goodness sake, or even a telephone appointment. This is appalling.
If the headaches with the Vit D continue she should discuss with her doctor to see if there is an alternative. Look at the Patient Information Leaflet, see what the ingredients are. It could be the Vit D or it could be excipients. If the GP can't come up with an alternative there are D3 softgels your sister can buy with just D3 and extra virgin olive oil (Doctor's Best is one brand, I use them and they are excellent), no excipients, she may be better with those.
Thank you for the update but your poor sister is being treated very shoddily.
I absolutely endorse what SeasideSusie has put in her reply.
I shall quote what the NHS says (for patients to read):
Myxoedema coma
In very rare cases, a severe underactive thyroid may lead to a life-threatening condition called myxoedema coma. This is where the thyroid hormone levels become very low, causing symptoms such as confusion, hypothermia and drowsiness.
Myxoedema coma requires emergency treatment in hospital. It's usually treated with thyroid hormone replacement medication given directly into a vein. In some cases, other treatments such as breathing support, antibiotics and steroid medication (corticosteroids) are also required.
Your sister is well on her way towards this. It impossible to say "Her TSH is 145, she won't go into myxoedema coma until it hits 200." - or anything like that. She has seriously elevated TSH, desperately low iron, and poor GFR (which can be caused by low thyrod hormone levels).
We are all used to seeing reports of A&E waiting times - someone taken to A&E as they go into myxoedema coma is treated as an emergency even within their already urgent cases.
The GP does NOT UNDERSTAND the imperative of urgent treatment. She should understand - and there is plenty of reference material for her to check.
I had no idea about Myxoedema omg that’s terrifying. I just read that swollen eyelids are a sign of it and my sister has had that for over a month, it’s the reason I became very worried about her and wondered what was wrong.
I called the doctors just now and told them this is life threatening and being overlooked and my sister is already showing signs of Myxoedema and needs immediate treatment. I only got to speak to the receptionist, she put my on hold and said she had to read the notes. Came back and gave an appointment for 10:20am on Monday, I said it’s too long and she said it’s only 2 days and all they can do.
Sister text me and said an early appointment just popped up on her phone so I called her and explained I spoke with them, I had to tell her why she needs to be seen urgently but at the same time trying not to frighten her cos the stress can be a trigger for the Myxoedema apparently. She said the doctor told her she’d get an appointment within a week or 2 before I called them and now I know about Myxoedema I can see how appalling that decision was. She’s a very young doctor and I think she’s qualified way too soon to miss something like this and then continue to fail my sister even after knowing the blood results.
Not sure what to do now but this is very upsetting and frustrating, my sister wants me to just leave it now and wait until Monday, I want to call the 111 line because what if Monday is too long.
It is very difficult for you, your sister, and us.
As it says, "very rare cases", BUT we have the problem of not being able to decide whether or not she is one of those very rare cases. I didn't want to alarm her, nor you, but I couldn't walk on past and not say something.
If there is deterioration, do call 111. Or turn up at A&E (if appropriate - obviously not ideal if you are many miles away).
Thank you I’m really glad it was mentioned and because of you awesome people we now have an appointment in 2 days, otherwise we’d still be sitting here waiting for them to finally get around to booking it.
I have no faith at all in this doctor and will make sure we don’t leave there without a prescription. Sister is feeling quite good tonight, Shes forgotten to take her iron at all today though and I just reminded her how important those meds are so she’s set an alarm to make sure she remembers all doses of that and her vit D.
I think the mornings are the worst for her because she feels very poorly for the first part of the day, I’m wondering if that’s because TSH is the highest first thing. I’ll keep you posted and let you know how the appointment goes x
Hi guys, my sisters finally on Levothyroxine. She’s been prescribed 50mcg to take every morning and to go back in one month after getting a blood test.
I asked the doctor to include a test for her antibodies with the next blood check to see if the hypo is caused by Hashimoto’s, was this the right thing to do? I’ve seen a lot of people mention getting antibodies checked once diagnosed with hypo. The doctor said if it was Hashimoto it would have already passed because she would have had this a long time, but she still put her down for the test after we requested it.
Also wanted to check with you if the dose the doctor has given her is ok? Thanks for any advice x
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