Hi , just had blood results back form rheumatologist for sjogrens .

[juls]

bloods for sjogrens neg,, but they say i am still possible to have it.? ok and they also did my thyroid tsh and t4. tsh 5.29.. t4 19. there is a p o with a little squiggle besid it.? what ever that is .but says high. ?. any one have a clue please

[Clutter]

Juls, TSH 5.29 High means the result is above range. The squiggle is probably a lab initialisation/sign off. You're undermedicated and should request an increased dose of Levothyroxine. Most people are comfortable with TSH just above or below 1.0. Your FT4 isn't bad and an increase of T4 will improve/maintain it.

[waveylines]

Hi there juls,

Is it possible to pop the ranges up for each of the tests alongside the results? The ranges are the ones normally written in brackets. the ranges can vary a little bit from area to area according to different labs

In my area your TSH of 5.29 would be considered high as it is over the labs threshold. Your Ft4 at 19 would be considered in range. Usually a doctor would order a repeat test in three months time to see if your TSH is still high and to see what is happening to your Ft4. High reading of TSH alongside lowering level of Ft4 can mean you are developing an underactive thyroid gland. Your Gp should consider your symptoms and signs -if you go onto Thytroid Uk there is downloadable symptom sheet to tick off -which you could then show your doctor.

[juls in reply to waveylines]

Hi i am hypothyroid was diagnosed 7 years ago , been ok till now. im on 75 levo, but these tests were the result from my rheumatology report. which didnt know he was doing my tsh .? i have been having a lot of palpatations lately and putting weight on recently but as id had my own doc do tsh in march said it was normal at 1.29 . ? also i tested poitive for antibodies. years ago to.

[shaws Administrator in reply to juls]

Your TSH at 1.29 may still have been a bit high for you. Some of us need a low or suppressed TSH to feel well.

[juls in reply to shaws]

shaws . my new results yesterday were 5.29. 1.29 was in march, ? i dont feel tired which is what i can not understand more irratated and edgy,, high as a kite my husband says lol .

[shaws Administrator in reply to juls]

Juls, I never felt tired and my TSH reached 100 before diagnosis. We are all different and there are so many clinical symptoms.

I would suggest putting a new question with the above results plus the ranges. From now on always get a copy with the ranges and also put in the question about your antibodies. You will get more answers. Antibodies attack the thyroid gland, see link:-

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

[juls]

would that be why my palpitations are back .?

[Clutter in reply to juls]

Juls palpitations can be a sign of both under and over medication. TSH rising from 1.29 in March to 5.29 in June suggests a Hashi flare. A lot of Hashi patients find a gluten-free diet helps reduce antibodies and frequency and intensity of attacks. An increase in Levo will help with symptoms but could leave you feeling over medicated when the Hashi attack stops, so you may need 6 weekly TFTs for a while.

[waveylines]

Hi Juls - well your GP need s to raise your levo. The palpitations are likely to be linked as your body is trying to compensate by increasing it's level of adrenal output -hence palpitations. So if your atniboides were high were you diagnosed with Hashimosis ( autoimmune hypothyroidism). Your Gp should be keeping a careful eye on you as in that case your levels can vary according to whether your antibodies are attacking your thyroid. A lot of people say that a gluten free diet helps to bring the antibodies down so that might be worth investigating too.

[juls in reply to waveylines]

Hi wavey, you know this is right i do feel like im very anxious now, palps are going crazy right this moment just sitting at my pc. i am autoimmune hypothyroid yes, but this is where im confused endo doc said i dont have hashi..? hahaha so there u go.

[juls]

OH .. hmm that would be the reason i was thinking i was over medicated as for the palps and feeling edgy and shakey . to be honest i dont have a clue about tfts tthis and that.? but thanks.

[Clutter in reply to juls]

Thyroid Stimulating Hormone (TSH) is produced by the pituitary gland in response to the body's demand for more T3. TSH rises to stimulate the thyroid gland to produce thyroxine (T4) which is an inactive pre-hormone. T4 is converted in the liver and kidneys to produce the active hormone T3 which is required in every cell of the body.

High TSH usually equals low FT4 and low FT3 causing hypothyroid symptoms.

[honey53bee]

Hi Juls, re. Sjogren's tests. Your experience rings a few bells with my own. All my Sjogren's tests - bloods, scans, etc - came back negative, despite symptoms and I wasn't feeling great. Sjogren's, it seems, is a slow burner and may take a while to show up on the lab results. I thought I'd never get an answer. However, by a stroke of luck, my rheumatologist is one of the leading researchers into Sjogren's and he said that one of the definitive tests for him, is a lip biopsy where a sample of cells are removed. I had mine done at my local Dental Hospital who were fantastic and left no stone unturned as regards testing, scans, etc. They see Sjogren's patients on a regular basis because of the dry mouth and other dental related problems the disease causes. The biopsy doesn't take long to do and it's worth asking about it if you want to pursue the Sjogren's route to rule it in or out. Mine came back positive and as a result of that not only was my Sjogren's confirmed, but also on the back of that I managed, after a very lengthy battle, to eventually get my hypothyroidism diagnosed, as the two diseases are closely linked. Sjogren's is very manageable and there's an excellent organisation/website, the British Sjogren's Syndrome Association, who, like Thyroid UK are brilliant with information, help, etc. If you are hypothyroid and you do have Sjogren's, I've found that once I started treatment, the one helps the other and the Sjogren's is much improved. I even forgot I had it, so don't worry. As well as seeing a rheumatologist, I accessed some of the Sjogren's tests through my dentist and optician, who knew lots about it - dry eye and dry mouth being common symptoms and they both got the ball rolling. My doctor needed some convincing so that's why I decided to change my strategy and seek help via another source. When I got my diagnosis I returned to the docs with all the supporting evidence in place and there was no quibbling! My rheumatologist also does my thyroid bloods and because they're done at hospital, they tend to do the full range, as opposed to just the TSH.

[juls in reply to honey53bee]

Oh thanks for your time to send me all this info.they are sending me to see an eye doc as the eye drops have all been of no avail. so ill ask my dentist to do a lip biopsy . i also have mouth spray and a nasal gel spray. they just say possible sjogren's. so they have not actually havent ruled it out all together. so what type of treatment do you get honey? ill ask my dentistto do a lip bio. see how that goes . cheers for the replying x

[Ctb567 in reply to honey53bee]

Hi, its really interesting reading this post because I think I have sjogrens and I've had loads of negative tests and some people have been saying to me that it could take a while for it to show up on my labs because I'm only 19 and sjogrens is diagnosed usually later on in life. I've had dry eyes for 2 years (blepharitis), fatigue and weakness, constipation my whole life and the inside of my nose is really dry and cracked. Do you have to have a dry mouth for an accurate lip biopsy? And can I just ask any dentist to do a lip biopsy or would I need a referral? Thanks

[honey53bee in reply to Ctb567]

Hi Carly, sorry for the delay in replying re. suspected Sjogren's. Sjogren's affects about 4% of people in the UK; 90% of these are women and the biggest target group are women aged in their 30s - 60s. It seems we girls draw the short straw. However, men, children and young adults can also be affected. It's the second most common autoimmune disease, although it tends to be less well known than its other associates, eg. lupus, arthritis, thyroid disorders, etc. According to my consultant, on average it can take up to 10 years to start showing up on tests, a bit like thyroid problems flying under the radar despite lots of symptoms. Dry eyes and mouth are common signs but you don't necessarily have to have them both. Other signs are fatigue, dry nose, gastric problems, to name but a few. (As we know, they could be associated with all sorts of things). I was initially diagnosed because my eyes were so dry and very light sensitive, so I asked my optician to do some tests. You could do that if you wished. Alternatively, your dentist can refer you. I could be wrong, but as far as I know, your dentist might not do a biopsy. I think it's a Dental Hospital job. My mouth wasn't too dry but I was plagued with swollen glands and always seemed to need dental work, so the signs were there, even though the bloods refused to play ball. In a strange way I was delighted when my biopsy came back positive because I was vindicated (yet again) and as I said before, I used it to get my thyroid diagnosis. So, don't take no for an answer. You know how you feel. It'll put your mind at rest either way and if you have got it, there's lots you can do to manage it and start feeling better. If you have a good GP, they might be worth approaching. I didn't go through mine because, based on lots of experiences, I knew I'd get nowhere. Instead, I contacted the British Sjogren's website (they're based in Birmingham) for advice and information and then took this to my optician and they took it from there. Hope this helps. Squeak if you need anymore.

[honey53bee]

Glad to help Juls. My Sjogren's could've taken much longer to diagnose but as I said I struck very lucky with my consultant/rheumatologist and my dentist and optician were fantastic. They can give you lots of advice as they often come across it. I'm also taking part in the consultant's research project into Sjogren's by way of making a contribution. He referred me for a head/neck MRI and ultrasound scans of my salivary glands regarding Sjogren's, so you might get those. My dentist referred me to our local Dental Hospital for my biopsy. It's a little bit uncomfortable but you have a local anaesthetic and don't feel anything. My dentist also gave me gel for my dry mouth and my optician gave me eye drops. The hospital Eye Department gave me eye drops for daytime and eye ointment for night time. To be honest Juls, it's trial and error with the products (a bit like thyroxine) until you find something you like. I swear by Systane eye drops (bought from Boots, Sainsburys, Tescos pharmacies). I believe you can get them on prescription and they last quite a while. I paid about £8 at Tesco, but only because they work well. I put them in twice a day, sometimes more at this time of year due to pollen/hayfever. You don't get sticky eyes or blurred vision, etc. If your eyes are very light sensitive - another symptom - get yourself a pair of extra dark sunglasses. They literally do give your eyes light relief and are worth every penny. My sense of smell has virtually disappeared so occasionally, I rub a bit of Vaseline up my nose if it's irritating me, or I have hayfever, although even that has calmed down since my sense of smell went. I don't use the mouth gel because I prefer to drink more fluids, chew gum, etc. The other products I have are Lacri-Lube eye ointment for night-time, Carbomer Gel eye drops (these are like tear drops). As regards other treatment, I prefer to keep pain medication to a minimum only because I'm not keen on taking tablets, etc. I'm a great fan of acupuncture and Pilates, which eases the muscle stiffness that comes with Sjogren's flare-ups and hypothyroidism. I'm also trying to clean up my diet and ditch gluten, wheat, sugars and other rubbish. I take Vitamin D (20,000 units on prescription) which helps my eye dryness among many other things, zinc, selenium and Vitamin C. It's a huge learning curve and it's not easy, but I think with websites like this one, it motivates you to be proactive. I am slowly learning how to control the dis-ease, rather than let it control you. Ta ta for now!

[juls]

hello's ,not been here for a while been to see the eye doc, ok well she put this orange dye in hmm to test pressure and what ever they else it detect.s what a mess my eyes swelled up like pumkins blood shot eys and they then did the schimmer test out come form this was a big fat zero of tear production she says my eyes are very dry, huh you dont say ? so she asked me who was managing my sojgrens ..? no one i said as i havnt been diagnosed with it because of the negitive blood test .. so she says i do have it . the joys of doctors so now i have to have plugs put in i dont believe it the hospital said i had some tear production now she says i have none ? who the hell do i believe . grrr confuddled aint the word .. never mind she gave me drops celluvisc 1 % and a 0.5 % to try before the plugs are done. not happy to say the least , why do ppl need management ? any one know or had this same thing happen to them .?