I am having a telephone consultation on Thursday morning and will ask for blood test to check B12, Folate, VitD and Ferritin/Iron levels - not holding out much hope to be honest. Checked today and my referral hasn't even been done yet
Look forward to any comments.
Thanks
Hi all,
I was diagnosed with Hashimoto's thyroiditis twenty years ago and have been lucky to have had no real problems since diagnosis - till now!!!!
I went to the GP 4 months ago suffering from extreme fatigue (sleeping all day). I was sent for numerous blood tests which showed I had a low ferritin level and was put on iron supplements. Have been back and forward ever since as although some symptoms have improved, still feeling awful. Finally saw a GP who agreed to give me a thyroid test and also mentioned Addison's disease?
Results are back - thyroid 'slightly' high and Cortisol slightly low. Am being referred to Endocrinologist (first time since diagnosis).
Question is this - I am suffering from 'crushing' chest, breathlessness, no energy, 24 hour headaches, sore/dry eyes and 'fuzzy' head. Could this really be due to thyroid being slightly high???? I have been on 150mcg for years and told to reduce to 125mcg which have been on for three days.
Just curious whether these symptoms could be thyroid. Am getting very low mood wise, although feel pretty anxious at times too.
Sorry for the essay!!!!! Just need some help???
Thanks
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Without test results and ranges it makes commenting difficult - we would be guessing ! Have you had B12 - Folate - VitD tested ? Please post results if you have.
We are legally entitled to have all copies of test results - they are YOURS 😊
Thank you for responding. Haven't had any of the above tested - only got thyroid test after 4 months of asking!!!!!!!! I can try and get them tomorrow and post?? I know the ferritin was 9 and iron was 13.
Important to monitor iron whilst supplementing as too much is not good either ! VitC helps with absorption of iron. Were you told to keep iron away from thyroid meds ? - around 4 hours.
How about B12 - Folate - VitD ? - as mentioned above ? You need to know your FT4 & FT3 levels in addition to the TSH. It is possible all the Levo you are taking is not converting into T3 - the ACTIVE hormone. T4 is a storage hormone.
To be honest, I feel like I have been banging my head with GP's. Was told to leave 4 hours between thyroxine and iron. Have no idea what other levels are and iron has not been checked since February. The first GP told me to take supplements which I got from shop. Saw another GP couple of weeks later who said levels were fine. Yet another GP said levels were too low and put me on the iron supplements.
Was taking 3 a day at one point, but got put on antibiotics for sinisitus (didn't help) and couldn't fit them all in!!!
Feeling worse by the day and not helping that I have an 11 year old disabled child to look after on my own. Feeling very despondent
Now you have found this forum you will find all the support you need. With GP'S differing in their opinions is the very reason you need to take charge and obtain your results with ranges. You can then post them here and members will advise. Also links will be provided so you can read and learn. Knowledge enables you to ask the right questions.
Are you taking VitC with the iron ?
Have you looked at the links I have posted for you ?
OMG!!! Just read through links - never realised low iron could have such a massive impact. I will definitely get my results from tests tomorrow - think I might insist on having B12 etc tested too.
The information is quite mind blowing. Same as everything, until it affects you you have no idea - I have obviously been so lucky previously with thyroid
When you say 'thyroid' was slightly high, what exactly does that mean? TSH? The TSH isn't your thyroid, it's a pituitary hormone that doctors believe tells them all they need to know about the thyroid. It doesn't.
Or do you mean your FT4? You see, we always need the exact numbers - results and ranges - or else we're just guessing. We cannot know what is causing your symptoms without knowing what 'thyroid' means, and how high 'slightly' high actually is.
Since initial visit to GP I have ferritin level of 11 - told I am not anaemic - level currently at 13??? I was also told in February that I had Type 2 diabetes - reading of 7.1 so only .1 over. Went on a drastic change (including hypo) so wonder if that has had any affect?
Whole scenario has been a complete mess to be honest. Only went initially due to tiredness/fatigue (er iron???).
Well, you haven't put the ranges, but that FT4 looks very high. Still can't say if the keto diet has affected your conversion without seeing the FT3 result. But, low T3 could account for your symptoms. But, for most people, it's only T3 that causes symptoms when it's high or low, not T4.
So your FT4 is well over-range. But nothing concret can be said without seeing an FT3 result. doctors really, really don't understand that. Your FT4 may be high, but your FT3 could be on the floor.
Think GP's are useless to be honest. Why do they test for TSH and take their readings from that?? My TSH is obviously low - but what impact does that have?
GP told me to cut down from 150mcg to 125mcg one day and 150mcg the next. I have taken it down to 125 every day for time being until referral comes through?
Yes, they are useless. They know very little about thyroid - yet often they think they know it all! Having a low TSH has no impact on anything except your conversion. But, if you have to have your FT4 that high over-range, you're a poor converter, anyway. So, it doesn't make much difference. But, the keto diet could have made your conversion worse.
What you really need to do is get a private test - just FT4 and FT3, to ascertain your conversion.
I'm no good on the thyroid side of things but can possibly help you with the Addison's side of things. Like the others have said get a copy of your blood results. Find out what your cortisol level was & what time of day it was taken as cortisol levels vary throughout the day, the highest point is first thing in the morning so they should do an am blood cortisol. Certainly having low cortisol will account for your tiredness & some of the other symptoms. Your GP will also need to do T3 & T4 as TSH is not a reliable test if there is a pituitary problem.
That reading is low for 8.30, it should be nearly double that result. Hopefully a referral to an Endo should mean that he will do a Synacthen test to see how your adrenal glands react to the synacthen. Referral may take some time so if you get worse & start to feel dizzy & your BP drops then seek medical advice. Good luck!
Went to A&E on Wednesday night due to palpitations and lightheadedness. ECG came back fine. They seem to think it is due to my low Ferritin and thyroid. GP is adamant re Addisons and gave me referral. Two months away Don't think I can keep going that long I feel so ill. Seriously had enough now
First thing is, do you have any actual blood test results?
if not will need to get hold of copies. You are legally entitled to printed copies of your blood test results and lab ranges
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need enhanced access to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can make nominal charge for printing but many will do so for free (£10 max and can not charge at all after May 25th 2018 - that was last Friday)
How much Levothyroxine are you taking
Can you add most recent results and ranges for TSH, FT3 and FT4, plus very important have you also had thyroid antibodies tested ?
Also helpful if had vitamin D, folate, and B12 tested. Add results and ranges if you have them
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting.
If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances common too, especially gluten. So it's important to get antibodies tested.
I am speaking to GP on Thursday so will ask to get B12, VitD etc tested then. Will also query T3. They have advised they are referring me to Endocrinologist (letter not even done yet).
Was diagnosed as Hashimoto's 20 years ago - first ever blip.
I have been on 150mcg of Thyroxine for years - GP told me to cut down to 125 based on latest results.
Your ferritin is absolutely dire. Thyroid hormones need ferritin at least at 70 in order to work properly. (Hence high FT4 and hypo symptoms)
Lowering Levothyroxine is likely to make it all worse not better
You need vitamin D, folate and B12 tested too
See my post above about private testing
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
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 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, at same time push for vitamin D, folate and B12 tests
Saw GP again yesterday after being taken to A&E night previously. Have finally got referral - two months away!!! Having palpitations, lightheaded spells, sickness/nausea, no energy. Its a nightmare. I've got an 11 year old disabled child and can't look after her properly at all. Will it all end??????
My AM cortisol is lower than yours (185) when it was last tested and nothing got done about it because the ACTH (Short synacthen test) that was carried out at the hospital when my AM cortisol was 129 did not show a problem. You might have adrenal insufficiency which is not treated by GP's or it could be the low iron/ferritin making you feel so awful. I do know how you feel although my iron levels were fine but ferritin was low for me. However, i am not medically qualified in any way to tell you what it is or how to deal with it..i'm just sharing my experience. It must be very hard for you being a carer for your child too. Can anyone else help you with your child to give you a breather whilst you figure out what is going on?
Seems to be going on forever No-one able to help really. Think that is why I feel worse. I have changed thyroxine dose, but think it takes a while to work. Hopefully when that kicks in and Ferritin goes up I will at least be able to function. Did a little bit of ironing this morning and it has totally wiped me out.
Your result of 129 shows that you have secondary adrenal insufficiency & should be treated with Hydrocortisone - I'd ask for a referral to an Endo that understands adrenal/pituitary issues!
This was a couple of years ago now paulines. A more recent test showed 185 which was just below the low end of normal. I asked what was to be done and they said nothing!
That is still too low - the reference range given is for the whole day so if your test was done around 8-9am then it should be nearer 500nmol/ls. Cortisol levels vary throughout the day - if I knew how to attach a picture here I could show you what the normal ranges are!
You mentioned a referal. Who are you being referred to? is it endcrinology?2 months is a long time to wait so you are going to need to try and help yourself some more and pace yourself if everything is getting on top of you. Would be good if you could get an FT3 test seeing as your FT4 is slightly over range, without knowing this it would be difficult to say if all the levothyroxine you are taking is being converted to FT3 which is what you need. Are you noticing any improvement with taking the iron?
Yes. Referral to endocrinology. Asked GP again yesterday for up to date test on Ferritin, Iron, B12, Fosphate etc. Won't do FT3. Said the others don't need doing. Only test I came away with is for Calcium as my levels are through the roof!!!!
Certainly the endocrine system so at least you will be going to the right department. Could be to do with the pituitary gland if you google low calcium levels. All i can offer and i know you would do anyway is if you are feeling really awful then go to the hospital but i do also know that knowing something is not right but not knowing what it is can cause a great deal of anxiety as i had to go to A&E before i was diagnosed with hypothyroidism. You need to try and look after yourself as best you can and dont be afraid to ask others for help and ask away on here...i know i have been...and frequently lately!
Just thought i'd see how you are getting on? I think i am in a similar situation to you again re the persistent fatigue. Just had my AM cortisol done again and its now 180. My GP has emailed the endo people and is waiting for further instructions as in probably an aCTH test like i had done before. Are you still waiting for your referral?
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