Is this right or should I request a second opinion?

[OnTheCusp33]

Been suffering fatigue on another level, weight gain, brain fog etc etc so ordered private bloods for fatigue through medicheck. Results came back as low iron, low Vit D and low T4. THS was normal. Doctors notes was possibly hypothyroid but seek GP advice. Doctor wanted to wait for iron supplements etc which I’ve done and taken regular as clockwork. Started HRT (on docs request) and bloods redone show the same low T4. Doctor basically shrugged and said “we don’t really look at T4 only THS and yours is normal” and was ushered away.

Is this right? Is that correct? If they don’t look at T4 why bother testing it? Should I look into private specialist?

[SovietSong]

GPs are completely clueless regarding thyroid issues.They only test for TSH and T4.But T3 must be tested also.Most GPs won’t do anything unless TSH levels are over 10.Mine was at 8.04 and felt terrible,so many issues all over body.”In Range” doesn’t mean optimal.Doctors seem to take more heed of graphs on computer screens rather than how the patient is feeling.I’m just getting back to normal now after 12 months,took matters into my own hands and been using home thyroid tests via Monitor My Health” which test the full panel of TSH,T3 and T4.

[OnTheCusp33 in reply to SovietSong]

that’s really helpful. I’m going to look to get the tests redone as you’ve mentioned. Hopefully can get a full profile of what’s going on! My GP kind of just looked as if to say “oh well you’ll just have to live with it” clueless indeed

[SovietSong in reply to OnTheCusp33]

Makes me sooo angry.Yes you defo should get full check looked into as TSH alone is of no use.Those symptoms you mention all sound thyroid related.The brain fog I can defo relate to, mine always seemed worse in morning and there were mornings I didn’t want to get out of bed.Can I ask if you have or had other symptoms?headache,joint pain,muscle weakness,constipation,gastro issues,feeling cold?

[OnTheCusp33 in reply to SovietSong]

oh god yes all of them! Dry hair, cold extremities joint pain. Always cold. I have a hot water bottle even in this heat!

[SovietSong in reply to OnTheCusp33]

Yeah joint pain seems a common symptom.Hopefully you get answers asap.When you get blood results you should post them on here,lots of very helpful and knowledgeable people on here.Good luck.

[Tythrop in reply to SovietSong]

Is this 12 months on t 4 ? I I ask coz I'm just entering month 3 after 19 years undeactive coz tsh showed " in range" but t4 either below 12 or about 13 . I've just tested showing t4 as 16.4( 12-22) this is in t4 range for for first time in 19 years . I'm very interested in other people's experiences of the recovery thing as I need hope after 19 years of despair.

[SovietSong in reply to Tythrop]

Hi Tythrop, I had RAI due to Graves’ disease and been on Levothyroxine since(i guess about 16-17 years).I was on 125 daily for years without any issues but then after one particular blood test my GP upped dose to 150 and then reduced it dramatically to 100!!!.My dosage has been tinkered with so much this past year.I feel as if I need a prolonged period on a settled dose.Currently alternating 100/125 and I have felt a difference in last fortnight.It’s a disgrace that you have been living with this for 19 years.

[Tythrop in reply to SovietSong]

Do you find that you need more in winter than summer? My neighbour was a Dr in the British Antarctic Expecition many years ago and did research on Thyroid ,and found that tsh went up in the long dark winters ( more demand) and went down in the 24 hours daylight summers there . This process that there is a diurnal patter possi ly related to our evolutionary adaptation to hibernation . Also I have SAD which I believe is associated with thyroid . My situation is complicated by the fact that my tsh is " stuck on mid range " so no GP recognises need fir supplementation even though t4 is subterranean.

[SovietSong in reply to Tythrop]

That’s a very interesting point and one that I’ve never considered to be honest.Everyday is a school day!!

[Tythrop in reply to SovietSong]

Also look up Thyroid and cerebellum( eyes, ballance ,working memory ..) on pubmed . Also Thyroid and amygdala similar spellng ..its a bit of the brain( fear and anxiety? ) , also hippocampus ( memory? ) . Very very relevant to me and those like me . Lots to share but you haven't got the time . I will now try to put my chart in this thing for you .

[SovietSong in reply to Tythrop]

Have you been living with symptoms the last 19 years?headaches,brain fog,feeling cold and sluggish,constipation and gut issues?

[Tythrop in reply to SovietSong]

Oh yes ..all of the above ... Depression v bad especially in winter. I saw that my test results were odd in that there was low t4 and low tsh which doesn't make sense. The Endo consultant,when I'd been recording a t4 4result of around 12 ( range 12-22). for about 14 years said I was mot hypo .I put his ketter on the site a while back which elicited cries of shock . The big point from me is that Psychiatrists ( or at lease the ones I saw ,and on the youtube and the pubmed ). know about hypo and psychiatric issues. And downregulation of the HP T axis. I just wonder how long it will be fir me to feel full effects ..I'm recording 16 on the t4 sale ..this is ghe highest in my recordings starting in 2004 .I can post my chart on the site of you are interested. I'm a trained solicitor znd practiced gor 30+ years so evidence keeping is in my DNA

[SovietSong in reply to Tythrop]

yes id be interested in seeing the chart if possible.

[Tythrop in reply to SovietSong]

I'll try my computer skills

[Tythrop in reply to SovietSong]

docs.google.com/document/d/...

[helvella in reply to Tythrop]

The link looks OK but you have not allowed anonymous access!

I've included a screenshot showing what I see when I share a Google Drive file. In order to allow anyone access, I'd have to tick Anyone with the link. At the moment, people have to say who they are to access the file(s).

On different computers/tablets/phones and using different version of Google software, it might look a bit different but the idea will always be the same,

Screenshot of google drive sharing

[Tythrop in reply to helvella]

Thankyou .I've had a couple of requests with email addresses which don't give ID or geographical.location . I've ticked yes .Frankly I don't care who knows because I feel.that zivd berm so badly treated by NHS I want to shout it from rooftops . Having said thst I will have a go at what uouvfo ,and gratefull thanks to you

[GlowCoach Administrator in reply to Tythrop]

You need to edit all your links with new ones so that 'anyone with the link' can see the document as opposed to having to give you their email address. See image posted by Helvella.

[Tythrop in reply to GlowCoach]

Done??

[GlowCoach Administrator in reply to Tythrop]

Yes, thank you. 😊

[Tythrop in reply to helvella]

Trying to learn new stuff on Addroid phone is another skill I'm unintentionally developing due to HashiHypo× Healthunlocked . I think I've now allowed access to the links for my charts for page one starting 2004, then page 2 starting in 2018 ,and finally the most uptodate one whi h is page 3 for 2023 .I'm only doing this to disseminate info which might benefit others. Because tsh-only thing of NHS is doing untold damage to people , For me it's lasted 19 years of hypo until I went to a Psych. How many more are passing under the radar I wonder .I feel.that recode keeping is a good thing ..as evidence maybe

[Tythrop in reply to SovietSong]

docs.google.com/document/d/...

[Tythrop in reply to SovietSong]

docs.google.com/document/d/...

[Tythrop in reply to SovietSong]

This is a good one from.my GPs file : t4 very very low ( 12-22is the "range" ) tsh not on the least elevated as it should be for very low t4 ( you will see its 1.73 whereas the top of the so called tsh range is 4.2 ,so ,according to the Received Wisdom the tsh ,for a t4 of 12 should be 4.2 , but mine is nowhere near ..)You will see that I've got another one with a t4 of 8 ( subterranean when my husband thought I'd got dementia although I'd warned him him to expect this when I stopped my USA sourced Natural Dessicated Thyroid so that the Psych could see what my unsupplemented numbers were ,) ..Do for a t4 of 8.6 which is 37% below min ( 12-22,) my tsh was 1.71 ,that's 30% in range . The one before that (June 2022 when I was taking 1.5 grains of Armour which is around 90mcg ) had a t4 of9.4 (26% below min ( 12-22) and tsh of 0.48 which is 5.6% in tsh range of 0.27 - 4.2)

I would love to ram this info down the throats of the NHS but I know its a fruitless task . They have no time or inclination .

Photo of document

[SovietSong in reply to Tythrop]

"report normal, no further action"!!! So frustrating when our issues seem to fall on deaf ears.

[SovietSong in reply to Tythrop]

I really don’t know how you have handled all that for 19 years and gone about your daily tasks etc.You are defo on the right site for information/advice/support, I’m so much more clued up now thanks to people on here.

[GlowCoach Administrator]

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and offer recommendations better. Click on your image icon to start.

Could you share the actual results with us along with their ranges (thyroid and vitamins)? You can type them out or take a screenshot of results. Post one screenshot per reply.

Did you also have thyroid antibodies checked?

Depending on what your TSH was, there is a condition that GPs dont often deal with called secondary hypothyroidism where the TSH is normal but very low or below range FT4.

[OnTheCusp33 in reply to GlowCoach]

ooh ok! I’ll upload my results!

[SlowDragon Administrator in reply to OnTheCusp33]

ALWAYS test thyroid early morning, ideally just before 9am for highest TSH

Essential to test TSH, Ft4 and Ft3

Plus test TPO and TG thyroid antibodies at least once

Low vitamin levels are extremely common when hypothyroid.

What were vitamin D, folate, B12 and ferritin results before starting on supplements

What are they now at most recent results

Exactly what vitamin supplements are you taking

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning. 

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test 

healthunlocked.com/thyroidu...

[Tythrop in reply to GlowCoach]

Ref secondry hypo , Have you heard of Hysteresis of HTP axis aka " Disease Related Downregulation of tsh' ? I got this via Diogenese .Very good stuff on YouTube on it via a university in Israel. Sorry but I'm a bit of an enthusiast as I believe this is what I have and and many others following thyrotoxicosis / Hashi HypER episode .

[Laundry]

this is exactly my situation. My gp said t4 is rubbish that’s why they don’t test it on the nhs(when I took in a private well woman blood test that showed low t4 and normal TSH).

My response was well I’m a scientist and I know that when t4 is low, TSH SHOULD be raised and if it’s not it is a sign that the thyroid isn’t functioning as it should so that could mean secondary hypo or thyroid cancer and my family has a history of both on both sides. I also listed the symptons I’ve had for years that tick every box on the thyroid list. He concluded that TSH is fine so I’m fine.

I really don’t feel fine so I had a second opinion with another gp again listed my symptoms, showed the low t4 result, said my family history, showed the low iron, folate, vit d. He told me that TSH is in range so that means I’m fine. I said that in range TSH and low t4 is the definition of secondary hypothyroid or cancer. He said I just need to exercise. I said I would but I finish work at 2.30 and get in bed because I’m cold and tired and sleep for 15h and wake up tired I can’t even take care of my kids. He said just try and exercise it’ll do you good

😡😡😡

I’ve decided to pay for proper blood tests and take them somewhere that has some actual understanding. I’m going to have a zoom appt . In a 10min free chat with the dr there said of course you feel rubbish with t4 that low. And you have inflammation markers on your blood results (CRp 4.8) so there’s a problem in your body and you are not absorbing essential vitamins from your food, we need to find out why… I said so you don’t think I’m crazy? I’ve been made to feel like I’m crazy. She said you are absolutely not crazy and there are markers in your blood that shouldn’t be there and we would find out why find the root cause

I can’t go on like this so I’m going to find the money to see them. It might end up being a gluten intolerance or something simple or a side effect from other meds but I need to feel better and I’m sick of being treated like I’m nuts. I need someone to look at the whole picture and figure it out. Like you I’ve been put on HRT/antidepressants, I have tummy issues, tinnitus, nerve pain and all I do is sleep. I’m sad my gp didn’t help but I’m determined to get to the bottom of this. I need to live again. I’ll report back

[Tythrop in reply to Laundry]

From my experience : try a psychiatrist , hypo affect the cerebellum with mood disregulation ,ballance issues ,eyesight issues ,poss also reading/ dyslexia issues .T4 very needed in brain .Psychs know this stuff byr GPs don't. I know all about " can't go on like this" feeling . AskGP what tsh does and what t4 does? ....tsh is mot a metabolic hormone , just a signalling one as I understand .

[Stourie in reply to Tythrop]

I understood that it was t3 that the brain needs plenty of. Jo xx

[Tythrop in reply to Stourie]

I enphasise thst Im not an expert but hsve done some reading .My understanding is that t4 is the carrier chemical for t3. T3 as a general rule is synthysed ( made ) from from t4 ,So the t4 is transported to cells via blood supply , then within the cell it is converted to t3 . Incidentally ,a cell.is a whole amazing world unto itself .Anyway...Some t3 is made by anand sent out into the nlood system by the Thyroid if it is healthy ,but without the manufacturing process within the cells ( tissue level) there is nowhere near enough for a healthy body .As I understand it ,some people have a gene fault ( dio..something)which means they can't convert t4 into t3 ( bad converters ) .There is a YouTube channel by a lively Dr called Dr Renee who knows about this conversation thing and actually suffered from.it .Its well worth a listen

youtu.be/QJqWKwIriRs(Not working as expected?)

This might be the one she talks about her Dio- thingey but there are others by her and she is lovely and clear

[OnTheCusp33 in reply to Laundry]

yep 100% on with you! Dr telling you to exercise! Some days I can barely even get in the bath at her 16 hours sleep and I literally never feel better regardless of how much sleep I get! Exercise is just a joke! I tried walking and was so exhausted I slept a the entire next day practically. It’s like the doctor thinks I’m making it up? But why would anyone make this up?

[Tythrop]

This too is the bane of my life...20 years untreated Hashi hypo /autoimmune thytoid disease . Look up Histeresis of HTP axis on Pub Med ,also 'Disease Related downregulation of tsh" ...Diogenese told be about it .Here the body basically cuts off the top off the tsh range to preserve the supplies from a failing thyroid gland ..eeking out the supplies . It is an evolutionary adaptation I believe . But NHS doesn't recognise it as they are Flat Earthrs . .so the t4 will be low but tsh not desperately elevated. So ,for eg, I had a t4 reading of 8 ( range 12-22) but tsh " in range" and thyroid meds refused by GP and Endo consultant . Long story short I had the psyche symptoms ( dementia- like ) also puffy face and habds etc.....went to a Psychiatrist and he gave me Levo as a " no brainer" Do not put yourself through 20 years of Hashi Hypo Hell like me ..tell GP about this Hysetersus thing, give them the pub med articles and demand a Levo trial titrating upto 100mcg .

[Laundry in reply to Tythrop]

I’m dementia like and have a puffy face and upper arms too😬

[waveylines in reply to Laundry]

Old medical text books describe the signs symptoms of hypothyroidism with photographs beautifully. However as one young doctor told me recently "we are not interested in signs and symptoms, we go on blood tests and scans much more accurate!!!" This might be why so many patients these days feel and are unheard. No wonder there is talk of using robots to manage our medical conditions. I have to say no GP these days ever askes me how I feel or examines me...... I guess that approached required the application of brain matter. The 'modern' way means they don't have to. Consequences are huge....

[dunestar in reply to waveylines]

Beautiful description waveylines. What gets me is they treat ranges like cliff edges. So if you are a tiny bit within range everything is lovely and if you slip a bit out of range they may do something. I had the classic symptoms of low folate recently. Testing showed me to be in range but not far off the bottom. Completely dismissed by GP as within range. What's stupid is that she then starts looking for other reasons for my symptoms when the answer is staring her in the face. In some ways I don't blame them. They have so little time at a consultation, so listening to the patient eats into the allotted slot.

[waveylines in reply to dunestar]

Well said & so true. Another one was when the upper level of TSH was set at 4.7 Doctors started treated pretty promptly if you went over the range. Now the TSH is over 10 if you get a result of 10.1 they are likely to say it's fine!I had the same issue with B12. Mine was in range but at the bottom. I had classic symptoms of b12 deficiency, including struggling to walk. My GP couldn't treat cos I wasn't under the range.... 3 months later after self injecting b12 daily I went back. She could see for herself the difference the minute I strolled through the door.

The rigidity of sticking by blood test results, interpreting them literally and those alone as a diagnosis causes so much unnecessary suffering.

Hope you get your folate sorted out and feel better soon.

Have you been sent off for a scan then? 🤣

[SovietSong in reply to waveylines]

Agree 100% waveylines,no one gets examined anymore.Our surgery has been running a triage system since covid.So once getting through to reception(after about 15-20 mins)I have to tell the receptionist what my concerns/symptoms are, they then get the Doctor to call(what time?who knows)I then have to repeat the above symptoms to the GP who then decides if it’s worth an appointment or not(usually not).Seems like our symptoms are just typed into a search engine now and Dr Google will sort it out!!!

[waveylines in reply to SovietSong]

Arghhhhh.... Yes very true. My GP Surgery have gone one step further. You have to ring, (involves queuing for an hour) then the receptionist sends you an email with form attached which you fill in and submit. A GP will then view the form at some point and decide if you need an appointment or can treat from the form... If you are deemed worthy they send u a time usually phone call. (zero choice) if not u'll get a text which may give instruction. So if u get a phone call the doctor will then decide if they need a face to face appointment and then you might get an appointment. It's a joke! Please note no patient consultation which is part of the NHS Patient Charter. .

Am not sure what happens if you don't have an email, Internet or mobile phone.....are dyslexic, illiterate etc....

[SovietSong in reply to waveylines]

Wow!!im literally shaking my head whilst reading that.As you said in an earlier post “consequences are huge”

[TSH110 in reply to waveylines]

you die or just get left to suffer alone

[OnTheCusp33 in reply to SovietSong]

oh my god! Literally what I say to everyone practically word for word! The system is sooooo not working! Why waste time going through all these hoops just to see a doctor who won’t do anything anyway! It’s insane!

[Lovecake in reply to Laundry]

I haven’t read all the replies………have you had B12 checked?

My sister had really low B12 (supposedly isn’t pernicious anaemia). She had B12 injections and the “dementia like” symptoms disappeared. Her TSH was 35 - done as an add-on just in case 🙄

It’s cruel how they treat some of us these days.

[OnTheCusp33 in reply to Lovecake]

yep B12 all in order. Only iron and vit D low which I’ve been on prescription for

[Lovecake in reply to OnTheCusp33]

I had low iron, which was treated by GP. At the time I knew nothing about thyroid issues. My TSH was 5 but because the range was 0.5-5 it was considered normal and I was not told.

They need to get your vitD up to at least 100. Mine was 23 and they got it up to 80 then stopped the gels. It dropped again. I just supplement myself and it’s now around 100. Took a while though.

I found low vitD affected me in many ways and also low folate causes me bad fatigue. The docs don’t seem to understand it all goes together.

They did nothing till my TSH was 10. Then I started to learn…….joined here and things have improved a lot, although it’s not easy as you know.

I hope you get some relief very soon ☺️ 🧁

[Tythrop in reply to Laundry]

Yep I had all of these .. try a Psych and ask for t4 ,I was told that t4 is a standard " augmentation" med for them .

ncbi.nlm.nih.gov/pmc/articl....

[Simonron]

Your symptoms sound a lot like Long Covid - which I have had for three years. The NHS is concerned about a tumour over/on/inside my thyroid - which they say is working correctly. I doubt this. I am reaching towards the idea that T3 failing is the issue - but T3 is not tested by blood tests. In the distant past, Urine tests got a measure of T3 - which is the stuff that the body needs. I'll bet there is a link between T3 and Mitochondria. Ideas folks?

[OnTheCusp33 in reply to Simonron]

she suggested long covid but I’ve been tested and I’ve never even had covid. No spike protein no never had it. It’s like they are happier to just tell you “it’s something” rather than actually listening to you. Everyone knows what’s normal for them and sleeping 16 hours is definitely not normal for me. I’m going to private test and see what my T3 is. X

[Simonron in reply to OnTheCusp33]

I have read on the ZOE group that you can get Covid and not notice by the way, low or no covid symptoms can trigger stronger post covid, ie long covid reactions.

I have been sent down a rabbit hole today. My TSH levels are at the bottom, or just under it. What are your's?

[OnTheCusp33 in reply to Simonron]

I had the bloods to test if I’d ever had covid and it came back negative so I’m assuming not. My THS is completely fine. Around 2. My T4 is around 11 but depending on what lab it goes to shows either ok or borderline.

My question is though everyone’s normal is different. If my normal is usually in the high end then surely this low would mean I would be feel the way I do?

[nightingale-56 in reply to Simonron]

It might be worth your while getting private Thyroid tests done. There is a lot of good advice on the main Thyroid UK site and many knowledgeable people on this forum.

[Tythrop]

erikmessamore.com/hashimoto.....

[buddy99]

A rheumatologist, I saw, once said, "We are not accountants. We are doctors. We don't balance numbers. We treat people." I have found that he is in the minority with this opinion. It is just too easy for doctors to treat numbers. It requires much more work and brains to treat people. People are much more complex than numbers. And what works great for one patient could potentially kill another. That's where the problem lies. It is always best as a patient to collect as much information from reputable sources as possible and look out for yourself (unless you have been incredibly lucky and hit the doctor jackpot). This forum has a wealth of knowledgeable people. So it's a very good source of information. I see that you have taken matters into your own hands and will get a full thyroid panel. That's an excellent starting point. Go from there. It might take some time to figure out what works best for you. You will get all the support and info you need right here. I wish you all the best on your journey.