Had a lot going on health wise last couple of years. Last year I had several blood tests as low GFR for age (gfr 51, I am 31)
After seeing a nephrologist, they were not concerned and that was that.
The last couple of months I have had odd symptoms: dizziness/lightheaded, weight gain (gone from 11st8 to 12st 5 since January and now heaviest I've ever been), terrible cramps in legs which have been waking me up, and just been generally unwell at lot, tired and fatigued. I have had several periods of illness and absences from work which I never have before. Due to this I asked docs to do a blood test to check kidney function as I was concerned with this.
Had appt today which confirmed GFR stable but abnormal TSH. Doctor ran through questions and symptoms as described above.
She said that TS3 and Ts4 levels were still in normal range, so all is fine and have a repeat blood test in July.
I am wondering if this is normal or if something should be done in the meantime, seems like an awful long time to wait when I've been feeling crappy for so long and why wait if something could make me feel better. Her response was there would be no complications by waiting.
I know I should trust that, but I am a worrier (lost my 52 year old healthy mum and world, June 2020 to cancer after complaining of symptoms for a couple of months and being fobbed off).
Apologies for rambling all over the placr, guess I'm hoping people will say its fine and normal.
Thank you in advance for making it through.
Written by
AimeeA7X
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Hmm, well. Stress doesn’t affect TSH—or if it does, not to the point that TSH would head out of range.
I’m so sorry for what you’ve been through—been there too with my own mother but also with my husband.
First step, ask the receptionist at your GP surgery for a copy of your blood test results. It would be good to see how “normal” your FT4 and FT3 actually are.
It isn’t unusual for a GP to want to do a repeat set of blood test results but waiting until July seems too far away—2 months would be more reasonable, particularly given you have clear symptoms of hypothyroidism.
Did the doctor test anything else? Vitamin B12, folate, ferritin/iron, Vitamin D?
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone 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.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Have you had thyroid antibodies tested yet
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis) usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s.
Gluten intolerance is often a hidden issue too. If you have high thyroid antibodies…..Request coeliac blood test BEFORE considering trial on strictly gluten free diet
Great advice already given above regarding what to expect re testing, etc. I just wanted to add there is research showing strong connections between hypothyroidism and low kidney function.
Many members including myself have suffered elevated creatinine, reduced plasma flow and GFR. I also peed proteins for over a year. And the really awful thing is we are supposed to convert a small amount of thyroid hormone in the kidneys but when function is impaired we end up peeing out some of those already compromised levels.
The good news is everything reverses to normal once TSH reduces and thyroid hormones optimise with exogenous thyroid hormone replacement.
Be good to see your labs to assess where thyroid hormones lay with an over-range TSH.
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The Interaction Between Thyroid and Kidney Disease
Radd you are so right that when one is hypo the kidneys are affected. It happened to me years ago having a UTI and being on many rounds of antibiotics and nothing helped. I on my own raised my thyroid hormones to see if that would help me. That's when the UTI disappeared. Many Dr's are not aware of the connections between hypo thyroidism and kidney problems.
But did you have actual confirmed UTI’s or just raised proteins? Usually the two go together but my perplexed GP was sending my urine off every month for testing & it was always clear of infection.
I also didn’t have the usual cystitis burning but did suffer years of pelvic pain pre hypo diagnosis accompanied with frequent weeing, lower back pain, painful sex, etc which I now suspect was due to fibroids. I’ve had absolutely nothing since being optimally medicated.
It was confirmed that I was having UTI. And had all the symptoms of having UTI. Painful lower stomach pains and lower back pains. And incomplete emptying. What I was very disappointed in was that the Dr's where all aware that I was thyroid meds dependent patient and that I had TT and never thought of running labs on my thyroid levels . It just proves to me that the Dr's at least in my case missed the thyroid and UTI connections. It's very concerning. Glad that you posted and bought awareness to this very important and life saving points.
We as thyroid patients need to step up to the plate and be more pro active with our well-being.
AimeeA7X, sorry to hear about your health issues and especially so when you mention what happened to your Mum. It must have been an awful shock for you to lose her so young. You have every right to be concerned with a GFR of 50. Anything under 60 is classed as AKI, acute kidney injury.
I was very alarmed to be sent a letter to attend an appointment with the practice nurse to discuss my AKI. (It was news to me I had AKI) The GP had been messing about with my levo dose (due to under range TSH) and I was undertreated. I had just joined this site and learned about the connection with low kidney function and hypothyroidism. My GFR, 58, never really improved until I was allowed to have some liothyronine, T3 My last reading was 73!!!
Do request a repeat blood test after 6 weeks and if they get awkward with you tell them about what happened to your Mum. It isn't right that someone so young has GFR of 50 and no one seems concerned. GFR does reduce with age.
Hope things will improve for you once you know what your thyroid is doing and you have checked your vitamins. You will get lots of support on here.
Thank you all for your reassuring and informative replies. It makes me feel much better knowing.Tbh I had no idea about the kidney relation.
Funnily enough I am currently on my second round of antibiotics for a kidney infection and now cystitis... Loving life
I am completely fed up, but docs don't seem concerned and do feel fobbed off as I want to feel like a healthy 31 year old rather than someone who is constantly complaining of one thing or another.
I can book my own blood test once I receive the form so I will book it earlier than July.
Can anyone suggest anything that will help in the meantime to make me feel more human? E. G diet.
Regarding actual test results; I have not been told and can't access them on my NHS app.
I have been treated for folate deficiency in 2021 and last year I was told I also had low vit d, but to get out in the sun and take supplements during the winter.
It's very common for people with thyroid problems to have low Folate, Vitamin D and B12. See whether you can get them added to your new blood test. Someone above will have told you to do your blood test early in the morning.To try to feel better you could supplement with Vitamin D (not the 800iu ones, they won't make the slightest difference, something stronger) and methylfolate (rather than folic acid, which apparently doesn't work so well).
However it would be better if you had some proper test results before you start supplementing. Getting a private blood test done would certainly be your quickest way forward unless you can get your recent results from your surgery.
I think the vitamins were checked as I had a full blood test. Nothing was reported about the vitamins. That being said Nov 2019 I had a blood test and wasn't told I had folate deficieny until March 2020 🙄
I have vit d vitamins and folic acid for the folate already but haven't taken them for some time as I took them as directed. I was told to take daily folic acid (prescribed high dose) for 3 months, which I did. Took vitamin d through the darker months of the winter.
No idea what TSH was, only after speaking with the doctor did I even know it was a thing 😬 so no values were given as they wouldn't mean a great deal to me anyway due to my lack of knowledge. Good old Google to the rescue if I get them although I never speak to the same doctor whenever I have a problem 🤦♀️
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