Having to wait until tomorrow now for my "repeated" results (initial results T4 10.8 (12-22) TSH 4.22 (0.27 4.2) as all the receptionist emailed me (I asked for my Dr to call me 😫) was "slightly abnormal" so hes saying test again in a month! So thats 3 tests total 🤔
In a month I will literally be swinging off a branch!
Im exhausted, unsteady on my feet, heavy limbed, pains amd aches all over, carpel tunnel often, now Ive a sore on my nostrel thats itchy and wont heal its been here for weeks.
The gave me a print out of my last test (ie the initial one).. it had only T4 and TSH on it:
Erythrocite sedimentation rate 6mm/h
WBC 7.6 (4-11)
Tissu Transglutaminase Iga lev" 0.4 U/ml (0-7) Negative <7 ie negative for celiac
Serum total 25-OH ((vit D level")) 62 nmol/L. Ie. "Sufficient".
C reactive Protein 1mg/L (0-5)
Everything else is not remarkable pretty good/mid ranges.
I know I will phone into the surgery tomorrow for the repeated TSH & T4 levels but they are saying "slightly abnormal" but nothing about this feels slightly abnormal to me.
My confidence is really shot dealing with medical people and Im feeling a bit like a hypochondriac too.
How am positioning asking for all the extra things to be tested? And wah? - the antibodies etc and free active T's, ferritin etc (I have the list copied from @SlowDragon)
What if Dr sais no?
Im really anxious about sitting in their so called "slightly" abnormal range when nothing about the way I feel is slight.
Im battling a terrible depression with this. Im only 9 months post total hysterectomy, Im on HRT, Im about a month into a new antidepressant (I also have bowel endometriosis and PTSD and a disabled child of 4yrs) I usually feel a real lift off a new tablet but Im very tired, walking through water feeling, plus all I mentioned.
How can I position with my Dr that nothing Im feeling is slight and that I need treated, not test repeated in a month. My sister and mother have both been Hashimotos amd are on thyroxine.
Why are our above range and below range results DEEMED as slight to them. Surely the ranges should dictate why else is a range created?
Help me with this folks please!
Thank you in advance.
Helly.
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HellyLlewelly
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It’s very hard dealing with medical people. Breathe and explain to gp how you need to be there for your little one and you can’t be with how dreadful you’re feeling. Write a list and suggest you can’t wait for retesting. We’ve all been there, psyching myself up for endo appt in two weeks. You’re not alone!
It’s uncommon these days to find that doctors won’t prescribe until 10. All nhs labs now publish the new ranges and add notes to let doctors know regarding new test range as evidence by the OPs lab ranges (0.27-4.22) hence they’re concluding its only ‘slightly’ out of range.
Although I agree she has a clear family history and other autoimmune and hormonal issues so should be treated properly
Peanut31 thougjt I would copy you into this given your reply below also. You may still come across some Gps who aren’t aware of new guidelines but at least the labs are now clued up and informing them. Nhs guidelines have changed in last couple years
The notes stated "low" and "high" by the lab. Low after T4 10.8 and high after TSH 4.22
Its my Dr who has read this ^ and deducted himself that its only "slightly Abnormal"
I will get the actual figures for the 2nd round of testing off them tomorrow.
You can tell how anxious I am.
I really did need to hear today what the ranges were but to be labelled "slightly abnormal" again over email and test in another month has really irked me.
NB- you already have the ranges posted above in your original message - they are the numbers in brackets next to your tsh and t4 results. Tsh range is (0.27-4.2) hence your ‘4.22’ is just over. But Hashi patients feel better generally on tsh of below 1.0
your t4 should be (12-22) and at 10.8 is very low. Ideally should be in upper third of the range.
Considering t4 to t3 conversion is 3:1 normally, your t3 levels will be floored also. Not even accounting for the oestrogen binding effect (!)
Hi saya85, could you explain to me about the oestrogen binding effect please. I’m also on HRT. (Patches) Are you suggesting it affects our t3 levels? I read it could cause my antibodies to be higher.
No worries - normal amounts of oestrogen are obviously normal for women but if higher or sustained or oestrogen only (without balance of progesterone) then it can have an effect.
I upped my thyroxine as soon as I started oestrogen again and it’s seemed to have minimised all the horrible effects I had last cycle. However haven’t had bloods back yet so will find out if the numbers support how I’m feeling.
I was on HRT patches due to a full hysterectomy and this was before Hashimoto’s was diagnosed. I don’t take progesterone, my endo said I don’t need it as I don’t have ovaries.
I’m now taking some T3 with my levo, so hopefully will have helped that issue. 🙂
Ah I see (but completely disagree with consultant! Progesterone is an important hormone for a lot of things not just ovary support/ovulation) it also depends on your age. If you are menopausal you wouldn’t be producing your own progesterone anyway but a lot of women do feel better on both. Maybe you can research for yourself to see if it would help you.
T3 sounds the right thing to do- so that you eliminate the need to free up t4 binding and don’t have to worry about conversion. Your lucky you were prescribed it!
As I hope to be pregnant soon my t4 is very important as that is what a developing embryo uses not t3. So I need to try and manage my t4 dose
Thank you for the info and advice. I’m now 53 so possibly would be post menopausal by now.
Interesting about the T4 level though. I’m trying to gain as much advice as poss for my daughter, just in case she has issues when having children etc.
Private endo. My cousin, my sister and I all see the same one.
My GP freaks out about the use of T3. One GP said I was fine with a TSH of 2.5 - I was barely able to do more than an elderly lady in a care home.
I had too many energy dips and days of fatigue after a busy day. This is why the endo added some T3. It was taking too long to get my energy back on T4 alone (1-4 days). Oh, and busy day - for me, not “normal” people.
I am exactly like this, yesterday because I HOOVERED and cleaned my leather sofa (I have a 4 yr old boy) Ive totally overslept and feel like a truck has hit me.
My new TSH is 4.55 today up from 4.22 (.027-4.2)
Its to be repeated in a month.
I dunno where I will be in a month..like an acme comic scene disintegrated into my boots....
Hi Helly, yes, I think it kicked it off. But, I didn’t know it was so bad in the family then. I was getting bad migraines so the GPs just focused on that. I was put on amytriptaline and had to take migraine tablets at the onset of a migraine.
I spent approx 6 months of days (excluding nights) in bed either with a migraine, trying to prevent one or getting over one in a total of 6 years. I kept saying I was exhausted. They did blood tests and said it was ok (I was naive then, didn’t ask for printouts). I had no iron reserves at one point, so was put on iron for 6 months.
I now have my results online. It turns out my TSH was 5 for at least 3 years before it went up to 9.9!!! No one told me a thing.
Didn’t even test my vitamin D level which in 2016 was down to 21.
I am rather over the top now with results and taking vitamins and being dairy and soy free. Gluten is harder, but is almost zero (I will get there). I have very high antibody levels too. But I’m not going to give in - except when I haven’t got the energy to fight.
I agree with some of the other answers you have here - take some bullet point notes to the GP. Ask for a trial period of Thyroxine. If you feel miles better they will be glad as you will be less likely to need constant appointments to have help.
One last thing. Do you get your vitamin d checked? When my level is 80-100nmol then my migraines are less severe and less frequent. Just might be something that would help you.
I don’t retain vitD at all and even when on tablets and eating my lunch in the sun (hated it) my level still dropped. I need to take capsules or the spray as recommended by SeasideSusie on here. (Betteryou). Maybe I’m a vampire? 😂 You gotta laugh or you’d cry!
I can only urge you not to put up with this treatment. They did this to me and when I got my medical records copied, I looked at the last 20 years worth and they had diagnosed me 15 years ago but didn't tell me so left me with no meds. My TSH was nearer 10 most of the time, and the notes on my records always said 'abnormal, test again in three months. They did this to me for all these years. In the meantime put me on anti inflammatories, anti depressants, anti psychotics, anti biotics for the persistent infections (many of which cause vitamin deficiencies and gut problems), endless steroid creams for the sore skin in my nostrils, ears and other places, skin kept splitting and weeping, anti epileptics. All these pills and potions but they ignored my thyroid. I lost many years of my life ( the best years) and if they had their way, I still would not be treated. I buy my own NDT now and the depression is gone, funny that isn't it? Gone in just two weeks!
Drs don't listen to patients anymore. They have become readers of bits of paper and they dismiss patient symptoms as unimportant. Don't put up with it. Gather all your evidence. Take your temperature first thing every morning before you have a drink or eat. Your temperature will be lower than it should be. Write all your symptoms out. Buy 2nd hand copy of Dr Barry Durrant-Peatfields book 'your thyroid and how to keep it healthy and become expert at how the thyroid works so you can make your case to your Dr. Maybe loan him or her a copy of the book.
Just don't accept this. It is not good enough to keep fobbing you off if you are this poorly, you deserve better. Good luck!
Take a read through the following doctor's website (note that there is a page with links to journal articles, etc. that support his approach) with regard to hormone restoration in cases such as this.
Thank you. I think I need to print this out and have it mounted on the wall for constant reference. (Can imagine my husbands face 🤨) Plus do a copy to take with me to the docs if I ever go back.
At least my endo does treat his patients like Dr Linder. But only for the thyroid and not with the reproductive system (or lack of it in my case).
Hopefully hubby can see it as just part of his husbandly duties to also understand it to support you in your desire for good health. My teen daughter has had to be tracking her cervical mucus as part of getting her system sorted out. I told hubby that "when she wants to show you her chart and talk about it, act interested and like it doesn't bother you." It isn't going to kill him to hear about mucus.
😂 yep, I totally agree. Mine is ok really. He doesn’t get it completely but is used to me eating plain food because of migraines and now taking even more out of my choice of foods. And as we get older even more things get crossed off the list. Onions, forget it, too painful. He should eat more sensibly himself, but is not kind to his body unless something causes severe distress to him.
Over the years us humans have certainly got many things wrong. Thank goodness it’s more acceptable in restaurants and food shops to have good old fashioned fresh food.
I wish you and your daughter a healthy merry Christmas ☺️
thougjt I would copy you into this given your reply below also. You may still come across some Gps who aren’t aware of new guidelines but at least the labs are now clued up and informing them. Nhs guidelines have changed in last couple years
My experience is I saw a GP within my practice and a private endo (from the list here, now removed because of this) early 2017, my TSH was 6, but I was told it was anxiety and my endo said that no medication would help.
Thinking this was true, I left it and getting worse, I started researching and turned to this forum for help, my husband took me to see another GP and my TSH had reached 12.2, I was then started on Levo.
My point is, that, we are still finding that GP's are still going by the TSH of 10 business, this is evident by the number of posts on here.
If you have found a GP that is very understanding and will listen to patients symptoms rather than lab ranges, hold onto them.
i'm sorry to hear that- absolutely there are still clueless GPs and endos - its horrific.
Thyroid guidelines have changed similar to vit D guidelines in the nhs in recent years but it is still taking time to get down to grass roots levels and not every doctor is aware.
I was just mentioning that because the OPs original lab ranges were (0.27-4.22) it shows that the range they are looking at is below 4.22 not below 10 for her GP practice/lab. So they shouldn't be able to ignore it for too long and it would be worth her persevering in pushing the GP in this instance rather than just self medicating.
I absolutely see why some people have to self medicate but if we are able to work with our GPs and get them on board (if the potential to do so is there!) then that would hopefully be best outcome for all involved.
Sadly if you have clueless doctors I can imagine there is no other avenue.
I do think my GP is understanding enough to be swayed!
Yes - I get this what you are saying above now ^
If the lab used ranges 0.27 to 4.2 for TSH then my 4.55 current one is out of range "high" as the lab have noted (("high")) this is surely their nudge to my Dr that it needs lowered. It sais on the print out that the lab should make notes to indicate to the Dr the interpretation of treatment...
They put "low" after my 10.8 T4 reading..
Yet my DR has went ahead and translated this to me as "slightly abnormal" retest in another month.
absolutely- he's being cautious because he doesn't fully understand it himself most likely and unless there's a glaringly obvious defect (usually a few !!! after the results) then they don't consider it a real issue.
its similar in my profession- we see the everyday problems our patients go through- small differences can make a big change. but if they were referred to our specialists or A&E those 'mild' concerns would be ignored or dismissed.
when they are used to seeing 'serious' cases (in their eyes) the slightly abnormal tests don't really register.
also far easier to dismiss someone as anxious. hypochondriac or you know....'womens problems'!
I think playing the guilt trip card with needing to be at best health for your son will encourage him to at least trial it. a trial dose of 50mcg with your tsh wont even be nearly enough to make you overtreated so he shouldn't have too many qualms.
A "Therapeutic trial" is what you're asking for. That means there's no comeback on the doctor if it doesn't work, so you can't sue them! Offer to sign a disclaimer as well if they want!
In fact it can be classed as neglect if they refuse to help you
Jnetti: What's a good time frame for the therapeutic trial? How long would it take for some of my symptoms to abate? These include: hair loss, nails splitting, dry skin, fatigue, under eye swelling, neuropathy, foot cramps, cold intolerance, heat intolerance, weight gain and difficulty losing weight, constipation, brain fog, loss of outer eyebrows, tingling in hands and feet, as well as Reynaud's phenomenon.
Ahh I see your other reply that you’re already on levo too.
Then yes it certainly would seem t3 may help if all your vitamins levels are controlled well.
T3 would probably take effect more quickly but it can be a trial and error to get to the right dose. Start small and add in slowly but others will be best placed to advise on t3.
You may wish to write your own post with some background and recent tests results for specific advice
Good question but I don't really know - at least several months almost certainly. Everyone is different and has different symptoms, though some are common to most people. What dose of Levo are you on now?
You should begin to feel a bit better quite soon once you start treatment, but it is very up and down. I started off on 25mcg in June after phoning the surgery when I hardly had enough concentration to string a sentence together. My TSH was nearly 6 and T4 lowish but within range. Since then I have only once felt as bad as before starting Levo, when bouts of breathlessness got an increase to 100. At the beginning the worst symptoms were brain fog, swollen eyelids (and sometimes the whole of my scalp!) occasional bouts of breathlessness and lack of concentration. Skin, hair and nails also affected.
I'm now up to 100mcg and probably almost where I need to be. There was a bit of a scary time at 50mcg when the TSH was officially within range at just below 3. The combination of a nurse who actually listened, a sympathetic practice pharmacist and a list of symptoms and how they affected my life gained an increase to 100 in 2 stages. Next blood test and another possible increase due in January, if needed.
Was just having that "anxious woman" hypochondriac conversation with a chum in my endometriosis support group today! We really have went years getting fobbed off.
Thank you and yes I WILL persue him for a 50mcg therapeutic trial as its not gonna do me any harm as yous say!
Why given my stats have the ladies on here said I am hypothyroidism yet the Dr say "slightly abnormal" ...
I wouldn't be happy if my car was running outside the performance ranges and would want it optimised to the best levels in the range...it just makes sense!
I'm in the same boat. My T3 result was 2.3, range is 2.57-4.43 pg/mL. So it was below the bottom of the range, and my doctor's comment was "Your T3 is slightly low, retest in 4-6 weeks." Obviously she doesn't know that optimal is in the upper quarter of the range, which would make my result "very low" rather than "slightly low." My message to her was "I suspect that at least some of the problems that are bothering me might be relieved by bringing my FT3 level up to the top 25% of the range - around 4 pg/mL." She responded with a suggestion of giving me a referral to Endocrinology. I thought about it, and cringed at starting all over again. And lately it is taking 3 months to get an appointment with a specialist. So I replied that if she is willing to prescribe some Cytomel, there would be no need to bother Endocrinology. I went in for testing yesterday. No results yet. Fingers crossed.
Hadnt finished lol sorry...as the Dr will be willing we cannot come back and sue them if there are repercussions!
I need thyroxine NOW Im literally a walking jittering zombie with tinnitus and carpel tunnel fingers, I will be crying through Christmas if no resolution before then!
Bear in mind that if you are hypothyroid, your cholesterol will be highIsh and the Drs like putting patients on statins. These are very unhelpful. Statins are a farce, we have all been fed lies about them, though Drs are rewarded for prescribing them. Please refuse statins at least until you get thyroid meds. Your cholesterol will correct itself then. 😉👍. Also look out for acid blocking drugs as they block your vitamins and minerals which will not help your thyroid.
Can completely understand where you’re coming from.
Your results are ‘just out of range’ but clearly the doctor doesn’t understand that a higher tsh in a normal person will push the thyroid to make MOrE thyroid hormone- if it was high last time then your t4 should have normalised by now.
Your t4 result is dire and suggests two things:
1) your thyroid is not functioning correctly and cannot produce the normal amount of t4
2) your t4 is being bound up and unavailable.
Because of your fh of hashimotos you could certainly be 1
But also given you are on HrT it may be option 2.
Oestrogen which is in hrt patches can bind up your t4 making it unavailable to convert to t3. Hence your tsh is getting higher to stimulate your thyroid but the t4 is being bound and so the cycle is broken.
You most likely are a mix of both. If your doctor is reluctant to treat you may wish to consider treating and addressing the following:
1) vitamin deficiencies - your vit D seems ok- I assume you are supplementing through the winter months?
Also get iron/ferritin/ folate/b12 tested as these can all have impact on thyroid conversion.
You can try reducing gluten in your diet and other interventions that generally help.
2) relook at your hrt. Oestrogen mono therapy in someone so young (assuming your not at menopausal age given your 4 year old) isn’t the best practice. A combination of
Oestrogen and progesterone together May work Better.
Also- you could trial lowering your oestrogen hrt dose to see if your thyroid ‘normalises’ in 3 months.
That could clear up whether it’s option 1 or 2.
Hope that makes sense. Having undergone ivf and been on oestrogen supplementation I know full well how horrible I felt and my thyroid skyrocketed.
It’s an uphill battle but maybe the above interventions will pacify your GP and also clear up some issues
Seya85 thank you so much for literally hitting the nail on the head. Im on combined hrt patches both estrogen and progesterone, the later for 1 year for endometriosis regrowth control.
I have dropped down in estrogen this past week to see if taking a third of the dose away has any impact on the way I am feeling.
I didnt realise estrogen had a binding effect on the thyroid hormone.
Though, as thr estrogen has reduced Im already feeling moody and headachey as I tend to be migrainey on the lower doses, but Im hoping this can still settle. Ive been day sweating more so I dont know how this is gonna go....
Yes Im on a supplement is a Menopause multivitamin so parts of it seem to be working as my blood work seems pretty good.
Amother lady suggested vitamin D above 80 (mine currently 62)
So I will get the vitamin D spray.
I need those other supplements like selenium and ferritin.
I’m glad they have you on multiple hrt- the side effects your getting from lowering the oestrogen are likely to be because your progesterone is now too high in comparison. Very common symptoms of high progesterone your describing. You would likely need to reduce both to keep it in check- but please do it after a discussion with your consultant. If lowering both will do more harm then good re: your endo then treating the thyroid is far better than lowering your hrt.
That’s good re: supplements. Often thyroid patients have gut issues that don’t let us absorb enough- and your supplements may still not be enough or the wrong form. I assume you’ve had them tested as you say your results are good. Ferritin takes a while to build up so do start ASAP. Take vit E with selenium.
Yes your vit D could be improved and certainly through winter months you will need to top up. Wouldn’t do more than 1000iu per day given your already sufficient level. The ‘better you’ brand do a vit D and k2 spray (as you need k2 to direct calcium to bones) and magensium alongside it.
These alone should make you feel a whole lot better and able to combat your symptoms.
I would also recommend high vit C- one for inflammation but also for iron absorption when you do try to improve your ferritin.
Im 39 I had adenomyosis womb (bulky enlarged uterus) with dysmenorrhea, cervical ectropian, endometriomas removed then riddled with endometriosis on my bowel so removed in March.
My womb was "spent" weighing about 3 times normal weight and making me almost urinary incontinent!
Thats my story lol. Hysterectomy past in March so Im 9 months post op plus bowel shave.
As reallyfedup123 has said until your TSH reaches 10 or above then your GP will not start you on Levothyroxine. NHS guidelines, despite you feeling so ill.
From what you have said, you’ve got more chance of winning the lottery than getting started on Levothyroxine by your GP, as you GP is not listening to you symptoms.
You have two options:
1: sit and wait until your TSH hits that magic number of 10, how long this will take nobody knows, and you will struggle.
This of course is not what you want.
2: self medicate on NDT, many do this, but not all GP’s will support this, this would include your GP as he sticking to the guidelines.
If he offers to refer you to an Endocrinologist, don’t expect too much, majority are diabetes specialist and if they also stick to NHS guidelines then your not going to achieve anything.
My friend who works in the hospital had her endocrinologist nurse take a look at my initial resuts 10.8 T4 (12-22) and 4.22 tsh (0.27 -4.2) and say my results are "borderline"
This is an NHS guidelines opinion.
Im really peeved off. Ive been feeling so low and to the point I was wanting to call the Samaritans a few weeks ago.
Really feeling strong resentment towards family and like I was alone and unsupported. Im convinced the change in thr way I feel is all coming from my thyroid being "slightly"abnormal.
Im not one for having these feelings.
The physical symptoms are here aswell as the mental ones and they are all significant regardless of my results 😥
Hi Helly, I was ‘borderline’ when i was first diagnosed after a trial of levo. Why don’t you go back to GP and ask for a ‘trial’ of levo to see if your symptoms improve? Just try and get them to give you at least 50mcg a day. Good luck. X
I’m confused, are you taking levo? If so, your tsh should be around 1 (even NICE guidelines say it should be in lower half of range, ie up to 2.5). Take more levo and experiment on yourself and see how you feel in a few weeks. I’m no expert! Just a thought and good luck.
The original poster (Helly Llewelly) is not on any thyroid meds, that's the issue.
The GP is saying it's just out of range and to come back in a month for another test.
Best Wishes
Peanut31
Hi HellyLlewelly,
I had hysterectomy 15yrs ago for Ovarian cancer and now thyroid cancer 2 yrs ago.... I read and article the other day recommended by another person if I can figure/find the article I will post it here for you. I didn't know this until I the read article that Thyroid disease has higher incident in women who had hysterectomy, is this true I don't know but if your hormones are off in one area It could be possible that your off in the other area as well..... I hope you don't have thyroid issues you don't want the double whammy of hormone nightmare. I think this is the article (however) it's alot of info...your going to have to read alot.
So sorry that you have been through both cancers I hope you are doing well now and feel good.
I have been wondering why so many older ladies were tellung me they felt great after hysterectomy when I continue to feel awful. Im almosr hoping tge family history I have of hypothyroidism is here do that I can get the thyroxine started and begin to feel human again.
How can I describe to my Dr that I am hypothyroid yet he doesnt see this yet on my results...should I try to explain it to him and can you help on what I should say?
I dont quite understand why I am hypothyroid I dont get it so cant explain it to others?
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additional test results
Would anybody be able to help me with my results? Still feel awful
When should you be subscribed medicine for an under active thyroid?
Please can you help with confusing test results?
would you add more T3?
